Perceptions of Shared Decision Making Among Patients with Spinal Cord Injuries/Disorders

Locatelli, Sara M.; Etingen, Bella; Heinemann, Allen W.; Neumann, Holly; Mišković, Ana; Chen, David; LaVela, Sherri L.

doi:10.1310/sci2016-00027

Cited by 10 publications

(5 citation statements)

References 42 publications

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“…Goal setting during rehabilitation is an important instrument to support a patient's participation in decision making . Achieving the best level of physical independence and quality of life is most successful when the patient is fully integrated in the goal‐setting process . In our study, patients experienced their occupational therapists to be helpful in the goal‐setting process.…”

Section: Discussionmentioning

confidence: 97%

“…Spinal cord injury (SCI) is an example of a complex health condition with a life‐threatening acute phase, an individualized comprehensive rehabilitation period and a lifelong chronic phase in which many persons with SCI need long‐term care and are at risk for multiple complications . To our knowledge, only some studies have been published on the participation in decision making by patients with SCI during their first rehabilitation after the onset of their condition . Accordingly, the aim of this study was, first, to explore patient retrospective views on decision making during the initial inpatient rehabilitation and, second, to identify barriers and facilitators for participation in decision making.…”

Section: Introductionmentioning

confidence: 99%

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Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—A qualitative interview‐based study

Scheel‐Sailer

Post

Michel

et al. 2017

Health Expectations

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IntroductionInvolving patients in decision making is a legal requirement in many countries, associated with better rehabilitation outcomes, but not easily accomplished during initial inpatient rehabilitation after severe trauma. Providing medical treatment according to the principles of shared decision making is challenging as a point in case for persons with spinal cord injury (SCI).ObjectivesThe aim of this study was to retrospectively explore the patients’ views on their participation in decision making during their first inpatient rehabilitation after onset of SCI, in order to optimize treatment concepts.MethodsA total of 22 participants with SCI were interviewed in‐depth using a semi‐structured interview scheme between 6 months and 35 years post‐onset. Interviews were transcribed verbatim and analysed with the Mayring method for qualitative content analysis.ResultsParticipants experienced a substantially reduced ability to participate in decision making during the early phase after SCI. They perceived physical, psychological and environmental factors to have impacted upon this ability. Patients mentioned regaining their ability to make decisions was an important goal during their first rehabilitation. Receiving adequate information in an understandable and personalized way was a prerequisite to achieve this goal. Other important factors included medical and psychological condition, personal engagement, time and dialogue with peers.ConclusionDuring the initial rehabilitation of patients with SCI, professionals need to deal with the discrepancy between the obligation to respect a patient's autonomy and their diminished ability for decision making.

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Section: Discussionmentioning

confidence: 97%

Section: Introductionmentioning

confidence: 99%

Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—A qualitative interview‐based study

Scheel‐Sailer

Post

Michel

et al. 2017

Health Expectations

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“…While people living with SCI should have an active role in their healthrelated decision making, engaging qualified health professionals in this process allows them to share health information, maintain a record of health issues, make referrals if needed, and ensure that decision making is informed. 20 level of pain that should be tolerated, future pain management plans, infection causes, future care arrangements, and gaining independence. While some participants acknowledged that there was still much unknown about managing spinal cord conditions and that health professionals did not always have the information to provide answers, many reported feelings of frustration.…”

Section: Feeling Isolatedmentioning

confidence: 99%

Experiences With Navigating and Managing Information in the Community Following Spinal Cord Injury

Lennox

Gabbe

Nunn

et al. 2018

Topics in Spinal Cord Injury Rehabilitation

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are developed, management recommendations are updated, or personal circumstances change. 8 Therefore, informational needs are ongoing, and up-to-date information is required to effectively prevent and treat secondary conditions. 9 However, people living with SCI have reported difficulties managing information about their condition in the community, 4 which could negatively impact on their independence and quality of life. 1 Previous studies have revealed that people living with SCI express unmet needs for information about preventing and managing secondary conditions years after injury, despite using a variety of sources. 4,10 Other studies have suggested that people living with SCI have preferred sources of information, but these are not always used, often due to lack of accessibility to health professionals. 9,11

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“… 30 31 Furthermore, health status is also associated with preference for SDM by patients. Research indicates that patients with mental and/or physical health issues do not engage in an effective SDM process with their healthcare providers, 32 while those who were involved in decision-making and those wishing to be more involved had an overall better health than other groups. 31 Additionally, women, patients with a higher educational level and healthier individuals were more likely to prefer an active role in decision-making, 22 while older people were more likely to prefer physician-led decisions.…”

Section: Introductionmentioning

confidence: 99%

Preference for shared decision-making among Arabic-speaking people with chronic diseases: a cross-sectional study

et al. 2022

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ObjectivesTo assess Arabic-speaking patients’ preference for involvement in decision-making in the United Arab Emirates (UAE) and characterise people who preferred involvement in decision-making.DesignCross-sectional quantitative study. The conduct and reporting of this research complied with Strengthening the Reporting of Observational Studies in Epidemiology guidelines for cross-sectional studies.SettingParticipants were recruited from outpatient clinics of 10 major hospitals in four cities in the UAE: Abu Dhabi, Dubai, Sharjah and Umm al Quwain.ParticipantsAdult patients with at least one chronic disease completed a cross-sectional survey consisting of 37 items in six sections measuring variables that may influence preferred involvement in decision-making. These included health literacy, health status, unanswered questions about care and satisfaction with treatment decisions. Bivariate and multivariate analyses were performed to determine the predictors of patients’ preferred involvement in decision-making.ResultsA total of 516 participants completed the survey. One-in-four participants preferred shared decision-making. Preferred involvement in decision-making was more frequent among women, not married, unemployed, people who rarely/never had unanswered questions and participants with anxiety/depression symptoms. After adjustment, not being married (OR=1.634; 95% CI 1.049 to 2.544) remained as a predictor of preferred involvement in decision-making, while having unanswered questions (OR=0.612; 95% CI 0.393 to 0.954) and problems in self-care were predictors of a preference for paternalistic decision-making (OR=0.423; 95% CI 0.181 to 0.993).ConclusionsContrary to the results from Western countries, this study showed that a majority of Arabic-speaking patients with chronic diseases preferred a paternalistic decision-making model. At the same time, some subgroups of Arabic-speaking people (eg, women, unemployed patients) had a higher preference for participation in decision-making. Physicians’ support and changes in healthcare systems are required to foster Arabic-speaking patients’ involvement in treatment decision-making process.

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Perceptions of Shared Decision Making Among Patients with Spinal Cord Injuries/Disorders

Cited by 10 publications

References 42 publications

Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—A qualitative interview‐based study

Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—A qualitative interview‐based study

Experiences With Navigating and Managing Information in the Community Following Spinal Cord Injury

Preference for shared decision-making among Arabic-speaking people with chronic diseases: a cross-sectional study

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