Personal, family and societal educational needs assessment of individuals with spinal cord injury in Iran

Design

A literature search was first conducted using the MESH specific research we used the specific search strategy which included the following three terms: Needs assessment, spinal cord injuries, and education. A qualitative approach was adopted with a systematic subjective approach used to describe life experiences and perceptions of individuals who suffered a traumatic SCI. To encourage full disclosure and expression of each individual’s unique perception, participants were asked to complete an anonymous, open-ended questionnaire through a web-based application from March 2015 to June 2016.

Participants

Individuals who suffered a traumatic SCI, were at least 18 years of age, and spoke Persian language were included in the study. Those who did not want to take part in the study or did not answer the questions were excluded. Informed consent was obtained from each person after receiving approval from The Ethical Boards of Sina Trauma and Surgery Research Center; Tehran University of Medical Sciences approved the study. We confirm that the study is according to principles of Helsinki Declaration. There were a total 61 patients who were enrolled and completed the questionnaire. The participants were recruited through various methods, including social media, email, and direct communication from personnel from the Brain and Spinal Cord Injury Research Center (BASIR), a large referral center in Tehran University of Medical Sciences, Tehran, Iran, and other non-governmental organizations. The sample size was determined when the investigator were convinced that theoretical saturation was achieved, which was the point at which sampling more data did not demonstrate any new findings.10 The researcher is empirically confident that each of the 3 categories is saturated.

Procedure

An online questionnaire was administered from March 2015 to June 2016. Prior to administering it patients were informed about the purpose of the study and assessed for willingness to participate. The first portion of the questionnaire provided information about demographics and injury-related characteristics which included age, gender, occupation, marital status, education level, mechanism of injury, and level of injury. The second part of the questionnaire pertaining to the patients’ educational needs. In addition, participants were asked about their preferred method of learning which could be either through self-learning, by involving family members, or through group-learning.

Data analysis

Descriptive coding was utilized to initially analyse the qualitative data from the participant’s questionnaires. Descriptive coding summarized the primary topic of the patient’s response into a word or short phrase. This coding approach is particularly useful when different types of data are gathered from interview transcripts, field notes, documents, and visual materials. After the data was coded, it was further summarized using Thematic Qualitative Data Analysis (QDA) as previously described by other authors.11-13 Thematic analysis is a higher level of categorization which involves identifying patterns within different texts and linking them to a common idea or theme. Unlike codes, which are most often single words or short phrases summarizing a single transcript, themes are phrases or even sentences that summarize the overall meanings of several transcripts. Themes can also be categorized or listed into a superordinate or subordinate outline format as an analytic method.11-15

We checked our data with 10 participants to evaluate if our data was reliable or not. Our consultation with experts from other research centres confirmed trustworthiness of our study.16

Personal educational needs

Personal educational needs could be broken down into 7 subthemes which included personal independence and transportation, financial independence, life skills modification, prevention of SCI complications, knowledge about SCI, relationships and sexual function, and psychological adjustments. More specifically, patients were concerned with issues such as personal hygiene, functional capacity, accessibility of transportation, utilizing wheelchairs, exercise activities, and financial independence. For example, one patient inquired about finding job that suits their modified abilities. Although financial independence is important, the patient was also concerned with having a job that would allow them to be independent, productive, and give them a sense of fulfillment.

Another major concern for patients was the lack of medical knowledge or understanding about their injury. The emphasis was on the need for a better education from their providers about the potential sequel and complications of SCI in order to prevent them and manage them appropriately. Dealing with complications such as pressure ulcers, urinary incontinence, muscle atrophy, neuropathic pain, and spasticity were among the most relevant complications for patients.

Family educational needs

Patients are also concerned about the educational needs of their family since they can play a significant role during the initial recovery and rehabilitation phases. More specifically, three subthemes were identified which included caregiver skills and communication, first aid and emergency skills, and emotional and psychological support. Most of the participants believed family members would benefit from being educated on psychological issues and communication skills. They emphasized that family members need further guidance on emotional support, patience, tolerance, and understanding. Knowledge about first aid treatments, emergency preparedness, and prevention of secondary complications were also noted as important issues that family members should be familiar with.

The impact of the disability on aspects such as each partner’s sexual relations and activities, as well as, each partner’s role in the relationship was a considerable source of anxiety, especially for females. The additional duties created by the disability and the shift of responsibilities to the other partner can produce severe stress within the family unit. Also, these concerns were more frequent as the severity of the injury increased. For example, a female with paraplegia receiving education mainly pertaining to sex-related activities, while a female with tetraplegia was also significantly distressed about pregnancy and therefore demanded additional education pertaining to prenatal, childbirth, and postnatal care.

Societal educational needs

Societal educational needs focused on issues relating to navigating tense social interactions arising from the stigmatizing effects of the patient’s disability. Participants recognized the need for educating the public on social encounters and communication skills with SCI patients. Specifically, participants felt that social concepts such as discrimination, prejudice, and disrespect towards SCI patients’ needs to be addressed. Patients believed their local communities have not received adequate cultural and behavioural competency training. Also the lack of access to civic life through disabled-friendly facilities is another setback, chiefly inadequacy of the designated routes for their transportation. As an illustration, a housewife with paraplegic SCI stated that people with disabilities do not enjoy from any convenient means of transportation. Overall, communities should be aware of issues such as negative attitudes, physical limitations, basic care needs, social integration, and lack of appropriate services and facilities for SCI patients in order to address them and improve their quality of life. One of the participants suggested that apart from expanding the rehabilitation facilities, the existing ones should work to educate surrounding communities.

Effective educational methods

In addition, we asked participants about their preferred method of being educated. They indicated that face-to-face education (40%) was the most effective method, followed by education online resources (32%), mass media (radio and television) (30%), mobile device (20%), self-learning method via DVD and CD compact (10%), and educational material (pamphlets booklets, and books) (8%).

Limitations

This study is at risk of sampling bias due to the exclusion of patients with a lack of internet accessibility and computer literacy. Certain population such as those from a higher socioeconomic background are represented to a greater degree than those who are from a lower socioeconomic background, elderly, or from an underserved population. Due to this sampling bias and the smaller sample size these results cannot be generalized. However, advantages of the online questionnaire include lower cost, ease of administration, comparable response rates, and the ability to obtain responses from patients who are geographically displaced.

Implications

The findings of this study reveal there are some unmet need from the victim’s perspective. It is important to assess potential educational needs prior to designing, planning, and implementing any interventional rehabilitative health care program, especially when focusing on sensitive issues. In terms of individual educational needs, it is crucial to develop an effective educational program according to the patient’s specific educational needs. For family educational needs, it is important to consider that SCI not only hampers individuals with SCI, but also have significant impact on families and caregivers as well.31,32 It brings physical, mental, financial, as well as social dysregulations and thereby has a ripple effect.

There are also “post-injury shifts in relationship dynamics” among family members to care providers. High levels of burden placed on the caregiver can manifest them self as physical and emotional stress, burnout, fatigue, anger, resentment and depression among caregivers.31 Therefore, there is a need to educate them on issues relating to these changes and maintaining a good rapport with them.

In regards to social education needs, reintegrating patients is a very important topics that need to be covered. Development of social skills will enhance their social participation, communication, and employability skills, all of which help prevent depression and increase quality of life7,8 Future researches with inclusions of larger series of individuals with SCI including those from an underprivileged society would further provide the real gravity of the problem.

In conclusion, SCI individuals have various unmet educational demands that need to be addressed in order to optimize their quality of health care. Educational health support should address personal, family, and social needs, and should be a part of a comprehensive rehabilitation program. Education support should address the patients’ personal and family needs, while educating the community about SCI in order to allow for their reintegration into society. It is important to continue assessing the needs of SCI individuals from a patient-centered perspective in order to directly address them and improve their quality of life.