https://orcid.org/0000-0003-1660-0847
Abstract
Context
Participation in SCI research with caregivers of children and adolescents with spinal cord injury (SCI) can occur in a range of different ways. This review explores the extent to which caregivers’ participation is connected to what might be called a voice.
Objectives
To explore the voice of caregivers by collating available research with the participation of caregivers of children and adolescents with SCI, and synthesizing how the research has been conducted.
Methods
The databases CINAHL, ERIC, MEDLINE, PsycInfo, and Scopus were searched for articles published between January 2008 and March 2022. Descriptive and narrative information was extracted and factors describing how caregivers participated were identified using an inductive approach.
Results
Twenty-nine articles were identified, of which 28 had affiliations connected to the USA, and 25 to Shriners Hospitals for Children. In most of the articles, the caregivers were invited to participate in the research to complete or develop measures. Information from the caregivers was often captured using close-structured questions and summarized quantitatively with little or no exploration of the perspectives of the caregivers.
Conclusion
The voice of caregivers of children and adolescents with SCI in research is limited by representativeness, the pre-determined emphasis, a lack of involvement in the process, and the reported narrative. By reflecting on voice, caregivers can have their experiences and perspectives acted upon to a greater extent to bring change, ultimately leading to improved care and health for children and adolescents with SCI.
Introduction
A caregiver can be described as a person who gives care to people who need help taking care of themselves (Citation1). Whilst all children require caregiver support, children with spinal cord injury (SCI) have greater dependency thus the role of the caregiver becomes even more important. Children with SCI and their families face significant physical, medical, and psychosocial challenges in both the acute phase of injury and long-term (Citation2). Even though caregivers play a critical role in the lives of children with SCI, relatively little is known about particular practices and experiences of being a caregiver and how the caregiving might impact the children’s health and function (Citation3).
In their prior work, two of the authors of this review describe being a caregiver of a child with SCI as feeling “lost in the system” and as being in a fight with the system rather than supported by the system (Citation4). In her role of being both a parent and a researcher, ES asks the question: “How can we as parents use our experiences to bring change and improve the care for our children and others?” (Citation4). People with lived experience can take part in research in different ways and the depth of their involvement will differ depending on the research design. The chosen research method will depend on the purpose of participation, for example, gathering demographic information, gaining insight, or listening to the perspectives of caregivers. Ashby (Citation5) describes voice as the right and ability to make oneself heard and to have one’s experiences and perspectives available to others; to participate in the construction of the self and to decide how to represent that self to others. Using this description, the voice of caregivers in research can be defined as the caregivers’ right to be heard; emphasis on experiences and perspectives; involvement in the process; and narrative influence.
There is a need for an exploration as to what extent, why, and how research listens to the voice of caregivers of children and adolescents with SCI, as well as of other people with lived experience. Scoping reviews may be carried out to determine both the extent of the research available regarding a topic and how the research has been conducted (Citation6), hence this method was selected. An overview describing the aspects of voice can create a shared language to be used in practice when planning and evaluating research where people with experience participate, thus ultimately improving the knowledge about caregiving, and improving the care and health of children and adolescents with SCI.
The purposes of this scoping review were to explore the voice of caregivers by collating available research with the participation of caregivers of children and adolescents with SCI and synthesizing how the research has been conducted.
Methods
For this scoping review, the methodological framework of Arksey and O’Malley (Citation7), revised by Levac et al. (Citation8), was applied. The review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) (Citation9) and a review protocol was registered with the Open Science Framework on 17 March 2022 (Citation10).
Eligibility criteria
The population was caregivers of children and adolescents, 0–19 years old, with an SCI. A caregiver was defined as a person who provides direct care for the child, e.g. a parent, grandparent, or legal guardian. The age range was decided using the definition of a child being 0–17 years, according to the definition in the United Nations Convention on the Rights of the Child (UNCRC) (Citation11), and the definition of an adolescent being 10–19 years according to the World Health Organization (WHO) (Citation12). Only articles where caregivers of children and adolescents with an acquired traumatic or a non-traumatic SCI participated were included, hence excluding congenital damage to the spinal cord (e.g. spina bifida, meningocele, or myelomeningocele). When an article had a combination of caregivers of children with other injuries/illnesses or caregivers to adults, the article was included if a majority were caregivers of children and adolescents with an acquired SCI. As the aim was to explore the range of caregivers’ voices in research, articles that did not go beyond caregivers completing demographic surveys or answering questions about their child or adolescent (proxy data) were excluded. Articles that did not describe the reason or method for the participation of caregivers were also excluded.
All forms of research literature published since January 2008 were eligible for inclusion. The entering of the Convention on the Rights of Persons with Disability (Citation13) in 2008, motivated the chosen date limit since this can be described as part of a movement from viewing persons with disabilities as “objects” of charity, medical treatment, and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society (Citation14). Three articles were not written in English and the full texts were translated using Google Translate (http://translate.google.com) to assess inclusion.
Information sources and search strategy
The search strategy, in accordance with the objective, aimed to locate peer-reviewed published research. An initial limited search of MEDLINE and SCOPUS was undertaken to identify articles on the topics. The words contained in the titles and abstracts of relevant articles, and the index terms used to describe the articles were used to develop a full search strategy. The search strategies used the following formula: “spinal cord injur*” AND child* OR adolescent* OR youth OR pediatric* OR paediatric* AND caregiver* OR parent* OR guardian* OR famil*. Search terms were tailored to individual databases including controlled vocabulary with help of a university librarian (Supplemental file 1).
Using the search terms, five electronic databases considered most relevant to this research area were searched on March 18, 2022: CINAHL (EBSCOhost), ERIC (ProQuest), MEDLINE (EBSCOhost), PsycInfo (ProQuest), and Scopus (Elsevier). A manual search of reference lists of the included articles and two journals was planned but removed from the search strategy since the process was difficult to perform and report in a replicable way. Since the objective was to synthesize peer-reviewed research literature, gray literature was not undertaken in this review.
Selection of sources of evidence
All articles identified through the searches were imported to Endnote bibliographic software (EndNote X9) and duplicates were removed. Titles and abstracts were screened independently by the first author (ES) together with a second reviewer (MA) for assessment against the inclusion criteria using Rayyan (http://rayyan.qcri.org), a web-based application for reviews. When a decision could not be made based on the abstract, the full article was reviewed. The inclusion and exclusion decisions were then reviewed by the wider team to ensure the reliability of the decisions. To achieve this, we randomly selected 20% of all inclusion and exclusion decisions which were then randomly allocated to three reviewers (KAJ, MO, DM). This identified an agreement rate of 78% with the first author. The research group met to discuss the conflicts and clarify the views of each reviewer. Discussions revealed that conflicts were due to a reviewer missing or overlooking information. Consensus was reached through discussions.
Charting the data
Data from the included articles were extracted by the first author (ES) using a data extraction form, which had first been piloted on a random sample of five articles by two reviewers (ES, KAJ). The purpose of the form was to collate descriptive information (e.g. study design and caregiver participants) and narrative information (e.g. the reason for having caregivers taking part) (Supplemental file 2). During the data charting process, the collated data were discussed among a group of reviewers (ES, KAJ, DM).
Collating, summarizing, and reporting the results
An inductive approach was applied to identify factors that described how caregivers participated in the research. The articles were read repeatedly by the first author (ES), who identified categories related to the caregivers’ participation. The categories were tested, sorted into dimensions, and discussed with the team regularly in a circular process. These categories were then used to group and synthesize the articles.
Results
Literature search
The literature search located 473 articles after duplicates were removed (). After screening, 81 potentially relevant full-text articles were reviewed resulting in 29 articles being included (complete data from the included articles are available in Supplemental file 3).
Figure 1 PRISMA flow diagram of search and study selection adapted from Moher et al. (Citation15).
Descriptive summary of the articles
With one exception (Citation16), included articles had authors affiliated with hospitals and universities in the USA (). The location was determined by reviewing the description, affiliation, and/or acknowledgment section within the article. In most of the articles, the determined location was Shriners Hospitals for Children (n = 25), sometimes in collaboration with other hospitals or centers in North America (n = 4). The articles were published across 14 different journals, with three journals publishing three or more of the articles: Spinal Cord (n = 10), Topics in Spinal Cord Medicine Rehabilitation (n = 4), and Journal of Spinal Cord Medicine (n = 3). There was one author response (Citation17) and the remaining articles were research studies. Of these, 14 used a quantitative study design, seven a qualitative design, and seven a mixed-methods design. The study design was determined based on the reported methods. In all articles providing information about the caregiver’s role, the majority were mothers (n = 16). A large proportion of articles (n = 14) excluded caregivers for speaking other languages except for English (n = 9) or English/Spanish (n = 5). Six articles excluded caregivers if their child had additional brain damage with cognitive delay or if the child was on mechanical ventilation (n = 2). The majority of articles (n = 26) briefly mentioned consent or ethical approval. None of the articles provided a detailed discussion of ethical considerations.
Table 1 Descriptive summary of the relevant articles.
The participation of caregivers
Three dimensions were used to explore how caregivers participated in the research process: the reason for having caregivers take part, how their participation was captured, and how it was presented. For each dimension categories were identified, four within reason and capturing and three within presentation (). These dimensions and categories were used to group and synthesize the articles.
Figure 2 Dimensions and categories describing how caregivers participated in the research.
The articles formed five groups (). In Group A (n = 9), the reason for inviting caregivers to participate in the research was to measure factors and/or relationships; the capturing was closed-structured using surveys or structured interviews; and the presentation was summarized data using statistics. In Group B (n = 6), the reason for inviting caregivers to participate was to develop or evaluate a measure; while the capturing and presentation were the same as in Group A. A further two groups were identified where the reason was also to develop or evaluate a measure, though this involved semi-structured capturing using cognitive interviews; presented by summarized data (n = 3) (Group C) or summarized data with quotations (n = 2) (Group D). In Group E (n = 6) the reason to invite caregivers to participate was to explore their experiences; the capturing was semi-structured using open-ended question(s) in a questionnaire, semi-structured interviews, or semi-structured focus groups; and the presentation was summarized data with quotations.
Figure 3 Five groups of articles categorized by reason, capturing, and presentation.
The final group, Group F (n = 3) (), had a unique combination of reason, capturing, and presentation. In Angel (Citation18), the capturing was open using in-depth interviews. In Behrman et al. (Citation19), the caregiver was involved in the process when asked by the authors to respond to commentaries on their study; and her letter was presented in full on the journal’s homepage. In Rivelli et al. (Citation40), the reason caregivers were part of an advisory board was to inform the process. The capturing was through semi-structured interviews, as well as involvement in the process as caregivers were part of an advisory board and presenters at a parent forum.
Figure 4 Group F, three articles with a unique combination of reason, capturing, and presentation.
Discussion
This review provides an overview of published research where caregivers of children and adolescents with SCI were participating to provide information. The levels of participation were analyzed using the dimensions Reason, Capturing, and Presentation. The different aspects of caregivers’ voice in research are discussed using the earlier suggested definition of caregivers’ voice in research: the caregivers’ right to be heard; emphasis on experiences and perspectives; involvement in the process; and narrative influence.
Right to be heard
Findings show that research, where caregivers of adolescents and children with SCI participate, is almost exclusively performed in the USA. Further to this, most of the participating caregivers were connected to Shriners Hospitals for Children, a healthcare system offering pediatric spinal cord care and services primarily at their hospitals in Chicago, Philadelphia, and Sacramento. Even though the Shriners hospitals are located in the USA, they provide care to children around the world. Without the research conducted by researchers connected to Shriners, there would be very limited information and knowledge about caregivers of children and adolescents with SCI. However, it is also evident that the participation of caregivers is mainly represented by this limited group of caregivers connected to Shriners. A majority of the caregivers were mothers, aligning with a previous review that found fathers to be underrepresented in childhood neuro-disability research (Citation45). Decisions made in the articles to exclude specific participants, e.g. caregivers of children and adolescents speaking another language than English, or being dependent on mechanical ventilation, affect the representativeness. Caregivers are not a homogenous group with common experiences and needs, but individuals who have unique needs for support (Citation46). Therefore, the weak representativeness of caregivers of children and adolescents with SCI in research, limits their right to be heard.
Emphasis on experiences and perspectives
In the largest group of articles (Group A), the reason for inviting caregivers to participate in the research was to measure factors or relationships, the capturing was closed-structured, and the presentation was summarized data. The second largest group (Group B) had the same capturing and presentation, with the reason to develop or evaluate a measure. These two groups represent 15 out of the 29 included articles. A similar finding is discussed by Hall and Harvey (Citation47) describing how a majority of the articles published in the journal Spinal Cord use quantitative methodologies to answer a particular research question where results are largely expressed numerically. Further, they discuss how qualitative research could be used to explore perspectives of e.g. family members, to gain in-depth information about a specific topic from the perspective of the individual. In our result, only nine articles (Group E and Group F) had caregivers taking part in the research with the reason to explore their experiences or perspectives, in most of the articles the emphasis was not in accordance with the definition of voice.
Involvement in the process
The involvement of patients in important decisions related to healthcare during the last several decades can be called a “patient revolution”, and the next wave of this revolution is active and meaningful engagement with patients in health-related research (Citation48). Patient and public involvement (PPI) in research can be defined as research being carried out “with” or “by” members of the public rather than “to”, “about” or “for” them (Citation49). It is increasingly recognized that experienced patients, their families, and caregivers, have a wealth of knowledge that comes from living and experiencing a medical condition (Citation48). Another term for doing research with persons with lived experience is Integrated Knowledge Transfer (IKT), a concept used in the SCI community. It is defined as meaningful engagement of the right users at the right time throughout the SCI research process (Citation50).
We argue that among the included articles, only two incorporate aspects of PPI or IKT. In Rivelli et al. (Citation39), the caregivers were involved in the research process by being part of the advisory board and presenters at the forum. It is not as apparent in Behrman et al. (Citation17), but we believe the way a caregiver was invited to share her experiences and how her text was published in full can be described as engaging the right user at the right time in the research process. Bray et al. (Citation51) have published a protocol describing a project to develop a healthcare transition intervention for young people with SCI, where both young people and caregivers will be co-researchers using participatory action research (PAR). Using PAR, the researchers describe how it will ensure that the needs of young people with SCI are integral to the proposed interventional approach and that their voice is heard and taken into consideration. With a few exceptions, caregivers of children and adolescents with SCI do not have a voice in research by participating in the process in more ways than answering questions asked by researchers.
Narrative influence
Harvey (Citation52) argues that “the words we use matter” and states that people should not be defined by their injuries, but rather person-centered terminology should be used, e.g. “people with spinal cord injury” not “spinal cord injured”. Authors are asked to use the term “participants”, not “subjects” since it implies that a person willingly took part in a study and was not merely considered an experimental object (Citation52). We read examples in the included articles of language implying differently where caregivers, children, and adolescents were termed “sample” and “subjects”, and when participants chose not to participate in a study, that was described as “refused participation” (see examples in ). Several of the articles use the term “experts” to describe how healthcare professionals were involved in the research, e.g. by participating in a Delphi exercise or panel. We argue that healthcare professionals are not the only experts, which is an opinion shared by Bochkezanian and Anderson (Citation53) stating that; to implement a new person-centered approach to research, we need to change our mindset of how we think of people living with SCI: “They are not just patients waiting to be healed. They are experts in living with a chronic disease.” (Citation53)
The Belmont report states that participants shall enter the research voluntarily with adequate information; the research shall emphasize the maximization of benefits, minimize potential harms; and ensure a fair distribution of the burdens and benefits (Citation54). Many of the articles describe research where caregivers, and sometimes children and adolescents, were involved by answering questions in the shape of one or several questionnaires, e.g. described as taking between 45 and 75 min to fill in (see examples in ). Not only is this a time-consuming and demanding task, but the questions themselves can be emotionally straining. The questions used can be described as sensitive regarding difficult life situations and negatively formulated, e.g. “It is hard for me/my child to do things with my/his/her friends because of poop accidents” (PedsQL™ SCI) (Citation55). Also, other methods used in the articles can be seen as challenging. In one article four repeated International Standards for Neurological Classification of SCI (ISNCSCI) (Citation56) exams were performed on each participating child and adolescent (Citation42). These exams involve detailed grading of sensory and muscle functioning including sensory and muscle tests of the anal sphincter. Up to 28 points on each side of the body are assessed regarding pin prick and light touch, and up to 10 muscles on each side are tested. The test can take up to several hours to complete. The first author, being a caregiver of a child with SCI herself, knows how challenging it is for her and her child to fill in lengthy forms, to stand next to her child during challenging ISCSCI exams, and to say no to research performed at hospitals or centers treating her child with fear of risking the relationship with healthcare professionals caring for her child. Most of the articles refer to consent and/or approval from an ethical board, but none of the articles discuss the possible challenges with informed consent, representativeness (only discussed as a method limitation), or benefits in relation to harm. The language used to describe how caregivers are taking part in the research and how their participation is discussed in publications reflects research being done to, rather than with caregivers, which serves to further diminish the voice of caregivers.
Limitations
Although transparently reported, less strict inclusion and exclusion decisions may have provided a broader range of results and a wider understanding of caregivers’ participation and voice in research. The views and experiences of the authors have likely affected the analytic process of this review though efforts have been taken to ensure that the method is transparent and replicable.
Voice is not an easy phenomenon to define or describe. Hadfield and Haw (Citation57) write that the construct “voice” has become such a broadly used term that it is in danger of losing much of its meaning. We agree with this critique and our results should not be seen as a comprehensive and complete description of caregivers’ voice in research since it would not be aligned with our view about the complexity of the term. However, with this review, we want to add perspectives and inspire discussions about caregivers’ participation in research. The author’s backgrounds in interdisciplinary research, social and health psychology, sociology, and rehabilitation, together with the first author’s lived experience being a caregiver of a child with SCI, have been a strength of this study. However, we acknowledge that authors with other backgrounds and experiences may have identified other important aspects regarding research in which caregivers of children and adolescents with SCI take part.
The voice of children and adolescents with SCI is at least, and most likely more, important than the voice of their caregivers. The background of this review was to explore how caregivers can use their experiences to bring change and improve the care for their children and others, hence the chosen focus. It is recommended that future research explore the voice of children and adolescents with SCI, in practice and research, to increase their ability to make themselves heard and have their opinions acted upon.
Conclusion
The participation of caregivers of children and adolescents with SCI in research can be described using the three dimensions: Reason, Capturing, and Presentation. The dimensions provide perspective and a language that can be applied when planning and evaluating research involving people with lived experience. The voice of caregivers of children and adolescents with SCI in research is limited by representativeness, the pre-determined emphasis, a lack of involvement in the process, and the reported narrative. The voice is almost exclusively represented by caregivers in the USA and the majority are connected to Shriners Hospitals for Children. The voice was most often one-way information gathering presented without quotations from caregivers, as opposed to a voice that reflects the caregivers’ experiences and perspectives more thoroughly. There were very few examples of research where caregivers participated in the research process beyond answering questions posed by researchers. The language used to describe their participation can sometimes imply that the caregivers’ role in the research is only as an experimental object and that the health professionals are the only experts. This, in combination with the lack of ethical discussions in publications, does not imply a narrative influenced by the voice of caregivers. By reflecting on caregivers’ voice in research; including the reason, capturing, and presentation of their participation; caregivers can have their experiences and perspectives acted upon to a greater extent to bring change, ultimately leading to improved care and health for children and adolescents with SCI.
Disclaimer statements
Contributors None.
Funding None.
Conflicts of interest Authors have no conflict of interests to declare.
Supplementary Information
Supplemental data for this article can be accessed on the publisher’s website. https://doi.org/10.1080/10790268.2022.2164455
Supplemental Material
Download Zip (64.6 KB)Acknowledgements
The authors acknowledge the support and feedback from Elisabeth Nylander, Jönköping University Library. The first author dedicates this review to her beloved and deeply missed mother Pia Salmiranta (deceased Dec 2021) and acknowledges her for her never-ending support and for always being available for brainstorming and discussions.
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