Background: People living with spinal cord injury (SCI) have reported difficulties managing information in the community, which can negatively impact their functional independence and ability to prevent secondary complications. Objective: This exploratory qualitative study aimed to describe the experiences of people living with SCI with navigating and managing information in the community from their perspective. Methods: Participants were recruited through the Australian Quadriplegic Association. Twenty-two semi-structured in-depth interviews were conducted with purposively selected participants to ensure representation of age, gender, SCI level, and compensation status. Data were thematically analyzed using a framework approach. Results: People living with SCI reported using multiple, complementary sources of information to prevent and manage secondary conditions. Over time, they learned to appraise the content, relevance, timing, and sources of information. Information delivered by health professionals in the rehabilitation setting was appraised as lacking personalization, but it acted as a springboard to search for more relevant information. Participants described the process of becoming experts about their condition to overcome the lack of knowledge of many general practitioners, guide their own care, and act as a source of information for others. Due to a lack of information provision, some participants missed health improvement opportunities and experienced frustration at the uncertainty of their future with SCI. Conclusion: Greater support is required for individuals with SCI to navigate information sources in the community. Rehabilitation is an opportune time to provide education related to finding and appraising information. Improved access to community health providers with SCI knowledge is also required.

After sustaining a spinal cord injury (SCI), individuals can develop debilitating secondary conditions, including urinary and bowel complications, chronic pain, and pressure areas.1,2 Within the first 2 years following SCI, 40% of patients in Victoria, Australia, were readmitted to hospital with a secondary condition, while 27% visited the emergency department.3 Over the 2 years, the costs of ED visits and readmissions were AUD$87,790 and AUD$5.6 M, respectively. While secondary conditions are common and costly, many are preventable.3 

To learn how to prevent and manage secondary conditions, individuals living with SCI require information and education.4 While they receive large amounts of information and education during their acute hospital and rehabilitation stay,5–7 alterations in management may be required as new techniques 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 

While some qualitative studies have been published exploring perceptions about SCI-related education and information, they do not comprehensively explore long-term resource searching in the community as they were specific to one secondary condition12 or focused on the rehabilitation setting.13,5 Manns and May6 conducted a Canadian study that addressed the information needs and barriers of people with SCI in the community. They found that people living with SCI had difficulty locating resources in the community and that community health care providers lacked SCI knowledge. However, there is a need for greater understanding about the current challenges faced by people living with SCI in an Australian health and community care context. Therefore, this exploratory qualitative study aimed to describe, from the perspective of people living with SCI, their experiences with navigating and managing information in the community. Managing refers to accessing, processing, and organizing information in order to make health care decisions.

Study design and ethics

Ethical approval for this exploratory qualitative study was granted by the Monash University Human Research Ethics Committee. Participants were recruited through the Australian Quadriplegic Association (AQA) Victoria, a non-profit organization that provides support and services to people with SCI. The study was advertised on the AQA Facebook page, in their regular newsletter, and via email to their members. Potential participants contacted researchers at Monash University via email or telephone to express interest. Participants were purposively selected to ensure representation of age, gender, SCI impairment level, and compensation status. The eligibility criteria were:

  • ≥18 years of age,

  • English-speaking,

  • Experience with secondary conditions following SCI, and

  • Received most health care services within the state of Victoria, Australia.

Twenty-two of the 26 individuals who expressed interest in the study consented to participate. Four potential participants were not able to be contacted or expressed interest in participation after recruitment had closed. In-depth semi-structured telephone interviews were conducted between September and October 2015 by three female interviewers (including the first and last authors), trained in qualitative interviewing, using a topic guide (see Table 1). The topic guide was developed by the expert SCI investigator team and tailored to the study aims, based on previous research. Further questioning led by participants' responses yielded additional information. Interviews were conducted until no new themes emerged. All interviews lasted between 30 and 60 minutes, were audio-recorded, and were transcribed including consent for participation at the start of the interview. Interview transcripts were loaded into NVivo (QSR International, Doncaster, Victoria) for data management.

Table 1.

Semi-structured topic guide

Semi-structured topic guide
Semi-structured topic guide

A qualitative thematic framework approach was used to analyze the data.14 This process commenced with repeatedly reading the transcripts to ensure familiarization. Repetitions in text and meaning were identified and coded. Through an iterative process, key themes and subthemes were formed based on patterns and connections within and between transcripts. Similar themes were clustered. The resulting framework was applied to the original transcripts to check for meaningful links and connections and make adjustments to ensure accurate representation. Two researchers (first and last author) performed the analysis independently. The framework was developed through regular discussion until complete agreement was achieved, which resolved any differences in interpretation of the findings.

Most participants were male (n = 16; 73%), over 50 years of age (n = 12; 55%), and lived in a metropolitan location (n = 15; 68%). At the time of interview, over half of the participants were injured more than 15 years ago (n = 12; 55%) and most had transport-related injuries (n = 11; 50%). Fifteen participants were living with tetraplegia (8 complete and 7 incomplete) and seven were living with paraplegia (complete and incomplete). Approximately one-quarter of participants had not completed secondary school, 41% held advanced diplomas, and the remaining participants held undergraduate or postgraduate qualifications. Three main themes and multiple subthemes were identified. See Table 2 for excerpts supporting themes and subthemes.

Table 2.

Themes, subthemes, and quotes

Themes, subthemes, and quotes
Themes, subthemes, and quotes
Table 2.

Themes, subthemes, and quotes (CONT.)

Themes, subthemes, and quotes (CONT.)
Themes, subthemes, and quotes (CONT.)

Sources of information

Multiple sources of information

Most participants used multiple, complementary sources of information at different stages throughout their recovery. The most common sources were health professionals, peer support networks, and the Internet. Health professionals, such as nurses, general practitioners (GPs), spinal consultants, and allied health professionals, provided verbal and written information and were generally available to answer questions in the acute hospital and rehabilitation settings, as well as during appointments, scheduled visits, or sometimes via telephone.

Spinal support organizations were often accessed in the community for support and connection with services, as well as to remain up-to-date with spinal news and developments via newsletters, websites, and informational events. Spinal support organizations also developed peer support networks that consisted of paid peer support workers or volunteer peer mentors who visited newly injured people in hospital and/or rehabilitation. Other people with SCI met during acute hospital or rehabilitation stays, in the community, or via social media were also part of peer support networks. Participants relied on these networks for support and advice on numerous topics, such as managing secondary conditions and psychological issues. A few participants stated that they were referred to a number of websites at rehabilitation discharge, and most participants reported searching for their own SCI-related information on the Internet upon returning to the community.

Some sources were useful at different times and served different purposes. Generic information from health professionals was useful at the beginning as a way to learn the essential information pertaining to their condition. Further down the recovery pathway, people living with SCI then expressed the need for more individualized information in the community.

Desire to act as a source of information and share knowledge

As they gained knowledge and experience, many people living with SCI became sources of information for others with similar injuries. Some participants developed networks with other individuals living with SCI in order to share information and help others problem solve, while others took on formal roles and gained employment (paid or voluntary) as peer support workers for spinal support organizations. Participants described their information networks as reciprocal relationships through which they could teach others and learn simultaneously. Some remarked on the utility of social media for sharing information and experiences.

Using SCI information

Appraisal of SCI-related information

Participants appraised the content, relevance, timing, and sources of information that they received. Some participants described the need to “become your own expert” (male, 18–50 yrs, ≥16 yrs post injury, #915), which typically involved drawing on personal experience, and appraising independently gathered information, as well as that provided by others. Those who had gained extensive knowledge about their condition over time felt more informed than some of the health professionals they consulted, as some reported preferring to make decisions based on their own knowledge.

Those with less SCI experience described appraising information for its relevance and timing. Generic information delivered by health professionals during acute hospital and rehabilitation admissions often appeared to lack personalization and therefore did not seem applicable.

Several participants appraised the information provided by others living with SCI as extremely valuable due to its practicality and relatability. They valued the opportunity to connect with someone who had experienced and understood what they were going through.

Learning to appraise information

Some participants stated that learning to appraise information was necessary in order to determine the utility of information. This learning process was described as something that occurred over time, particularly in relation to information found on the Internet.

Some participants suggested that education on how to appraise online information is required, given that not all individuals living with SCI were experienced with this process.

Delivery of information in a useful format

Information was often provided in verbal and written formats, and participants reported that both were useful and complementary. Verbal information was considered important when learning practical skills, however written information was useful to refer back to at a later stage. Some participants emphasized the importance of the format suiting the nature of the information to enhance utility, while others suggested that information received in rehabilitation should be individualized and tailored to varying learning styles.

Information used as a springboard for further searching

A number of participants reported receiving a significant amount of information during their rehabilitation stay. This gave them a basic understanding of their injury and acted as a springboard to search for information that was relevant to their specific issues. Participants' independent searches for information, mainly using the Internet, did not always yield the specific information they were looking for, but did guide further searches.

Some participants mentioned that they used independently resourced information as a starting point for discussion with health professionals prior to making any health-related decisions.

Issues encountered

Feeling isolated

Some participants voiced the need for an extended transition period from rehabilitation to aid settling back into the community. Upon returning home, participants felt that they were left on their own to manage their condition without ease of access to health professionals' advice. In the community, participants had to seek information out for themselves. The feeling of being left alone and unsupported after rehabilitation discharge was more prominent among participants who were injured more than 15 years ago. They stated that almost no information was provided during inpatient rehabilitation, thus they did not have an information base to build on or refer back to after discharge.

Some participants suggested that being left on their own was necessary in order to settle back into their home life. They realized that they would no longer have the constant informational support from health professionals. Consequently, they needed to learn to do things for themselves and determine how to apply the information they received outside of the controlled rehabilitation environment.

Difficulties encountered with access to information through health professionals

Many participants reported that accessing SCI information to manage their health could be difficult in the community. This issue was attributed to the small number of spinal patients in the population, which meant community health professionals, such as GPs, often had limited knowledge regarding the management of spinal patients. Furthermore, some participants described attempting to obtain information from spinal consultants as challenging. While spinal consultants had spinal-specific knowledge, some participants reported difficulty obtaining an appointment. Participants living in a rural location noted distance as an additional barrier.

A number of participants also anticipated that their needs would not be acknowledged by health professionals. They reported having specific psychological and sexual health information needs, however they perceived that these needs would be dismissed if they were raised. This resulted in participants keeping these concerns to themselves.

Lack of information led to missed opportunities

Some participants reported experiencing negative consequences as a result of not being made aware of certain information or not receiving information in a timely manner. They expressed that receiving this information could have improved their recovery trajectory.

Frustration at the uncertainty surrounding SCI

A number of participants communicated the need for further information to ease the uncertainty they felt about the origins of pain, the 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.

This study highlights the challenges that individuals living with SCI faced when attempting to meet their informational needs in the community. While they received a significant amount of information during rehabilitation, we found that people with SCI experienced difficult transitions back into the community and felt largely left on their own to navigate and integrate information relevant to their current and emerging needs. Furthermore, access to spinal consultants was reportedly limited, as was the knowledge of some GPs. Therefore, learning to integrate, appraise, and personalize information from multiple sources was necessary in order to increase their knowledge and become experts about their condition.

People living with SCI emphasized that when they were experiencing a particular secondary condition, information applicable to it was needed. Information provided initially after SCI does not meet ongoing and long-term informational needs as it can lose relevance and currency over time.4,8 Our findings, together with previous research, support the need for a model of care in which the provision of quality and personalized information continues beyond rehabilitation discharge.4,6 This involves ongoing relationships with health professionals knowledgeable about SCI, however, consistent with previous studies,4,7 participants reported difficulties accessing spinal consultants. Another barrier to obtaining SCI-related health information was the limited knowledge of some GPs, which has also been confirmed in other studies.11,15,16 In order to ensure that information provision is ongoing, a range of community-based health professionals need to have SCI-specific knowledge and therefore ready access to accurate SCI information.

Similar to previous studies, we found the Internet was one of the most commonly used sources of information.9,17 However, a notable finding was that individuals living with SCI suggested they were using online information to guide decision making related to the management of secondary conditions and, in some cases, bypassing health professionals in the process. This is likely due to the reported issues with access to knowledgeable health professionals. Matter et al9 suggested that in comparison to spinal consultants and community health professionals, the Internet is a readily available source, which may contribute to its popularity. Given that the quality of SCI-related information on the Internet can be variable,4,12 information must be appraised for its relevance and accuracy. In line with previous research,4,12 people with SCI were aware of the importance of appraising online information, but they emphasized that this was a skill they acquired over time. As many individuals living with SCI in the community are regularly sourcing information from the Internet, it is important that they understand how to critically appraise this information at an early stage. Without this skill, information may not be applied appropriately when making health decisions.18 These findings reinforce the need for ready access to knowledgeable health professionals prior to making important health-related decisions. Information found on the Internet can be useful for starting conversations with health professionals, and such discussion can support effective decision making about the management of secondary conditions.

Our study demonstrated that health literacy skills (such as the ability to access, use, understand, and apply information) developed and evolved among a number of participants with years of lived experience. Similar to previous studies,17,19 participants described the importance of advocating for their needs, which meant that, over time, they became experts about their conditions. In addition, our findings highlighted that some participants trusted their own knowledge over health professionals' advice. While people living with SCI should have an active role in their health-related 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 

Consistent with previous research, information received from those living with SCI was appraised as extremely valuable. Manns and May6 stated that both casual and formal peer support were sought by individuals living with SCI. Our study extended these findings, with participants who had greater years of lived experience reporting the desire to provide peer support. These reciprocal relationships allowed participants to learn from others, as well as share knowledge gained from their own lived experience. This supported those with less experience to avoid some preventable problems and learn how to navigate the information available in the community.

The recommendations provided in Table 3 may assist to address many of the issues raised by facilitating multiple points of access to high quality information in the community.

Table 3.

Recommendations

Recommendations
Recommendations

Limitations

People with an interest in sharing their experiences with managing information about secondary conditions in the community may have been more likely to participate in this study. We only interviewed English-speaking people and therefore the views of those who speak a language other than English may not be represented. We recruited participants through AQA Victoria who largely relied on the electronic distribution of information, thus those not connected to AQA or its linked partners or those without an Internet connection are unlikely to have had the opportunity to participate. Although our findings highlighted that the Internet was one of the most commonly used sources of information, it should be noted that the participants were an information technology savvy group, given that the majority responded to an electronic invitation.

Conclusion

The findings from this study highlight the difficulties people living with SCI face when attempting to meet their information-related needs in the community. There is a need to provide greater support to people with SCI early after injury to navigate and manage information. Education to improve health literacy and greater linkage with community health professionals prior to discharge from rehabilitation may facilitate ongoing access to high-quality SCI information that is relevant to individuals' needs.

This project was funded by the Transport Accident Commission, through the Institute for Safety, Compensation and Recovery Research. Professor Gabbe was supported by a Career Future Fellowship from the Australian Research Council (FT170100048). Dr Nunn is part of the Victorian Spinal Cord Service but was not involved in the collection of data or analysis.

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