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Introduction
Lower limb amputation is a loss that affects and changes several parameters of a patient's life, representing a challenge for him/her, the family, and the health professionals involved in the care process. Family caregivers are confronted with their family members’ clinical situations and the changes they bring about, which may hinder their ability to cope with and manage the situation (Areia et al., 2020).
After lower limb amputation, most people face stressful situations such as phantom pain, loss of functional independence, and changes in body image (Couture et al., 2012). The loss of physical, psychological, or intellectual autonomy caused by the disease and worsened by the amputation makes it impossible for the person to perform activities of daily living independently, thus compromising self-care and making them dependent on someone else to perform their activities of daily living.
Within a family, when a situation of illness with dependence on sick member arises, there is a need to make changes in the activities of daily living, and the role of caregiver is usually assumed by women, maids, or unemployed, single women who live with the dependent person. Taking on a new role is associated with multiple feelings and needs that may be antagonistic and contradictory regarding the competence, tension, and conflict that may be associated (Fernandes & Angelo, 2016).
Meleis et al. (2015) found that caring for a dependent person in a family has become increasingly common. The role of family caregivers arises when there is a change in the health condition of a family member, initiating a transition process within the family itself. This implies that a family member who assumes the role of caregiver will experience a situational type of transition, where changes will occur in the life of the person who becomes dependent, as well as in the life of the family caregiver, requiring learning and the acquisition of new skills. The same author defines transition as a change in health status, in the form of relationships, and in the abilities and hopes that will cause changes in the needs of individuals.
The needs of caregivers vary according to the transition stage they are in, and the assessment of these needs should be done taking into consider all areas of caregiving, family relationships, physical self-care, emotional, and practical needs (Shaw et al., 2016).
For an informal caregiver to feel empowered to care for the other, they must have knowledge about the illness of the person being cared for and acquire new skills for caregiving. Caregivers have their own potential and needs, which makes them unique (Castro et al., 2016). In the process of caring for dependent people, caregivers’ needs should be identified by considering their individual needs and those of the person being cared for (Antunes & Marques, 2017).
Caregivers show a set of needs that should be considered a focus of attention for nursing interventions (Melo et al., 2014). Caregivers assume multiple responsibilities and may generate overload, particularly when their needs are not adequately met (Tsai et al., 2015).
The identification of family caregivers' needs as early as possible is essential for nurses to develop interventions that empower caregivers in their role. Teixeira et al. (2017) found that empowerment and early intervention with family caregivers represent benefits for caregivers, persons cared for, and health systems, thereby promoting cost reduction and health gains. Caregivers are more vulnerable when they lack support, which has detrimental effects on individual, family, social, and economic levels.
The objective of this scoping review is to map the needs of family caregivers of the person with lower limb amputation. A preliminary search of the JBI Evidence Syntesis, Medline, and Cinahl databases was performed, and no published or developing reviews on the topic under study were identified.
This scoping review, intends to answer the following question: What are the needs of family caregivers of the person with lower limb amputation?
1. Methods
The present study was developed according to the scoping review methodology used to elaborate the mapping of concepts, sources, and evidence available in each research area and to identify possible gaps in knowledge concerning the topic under study. The development of this review protocol followed the recommendations of the Joanna Briggs Institute (Peters et al., 2020).
To ensure transparency and rigor, the study will be conducted according to the guidelines of the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews (Prisma-ScR) Cheklist (Tricco et al., 2018).
This scoping review protocol is registered in Open Science Framework (htpps://osf.io/wu82x).
The protocol has not been submitted to or published in any journal.
1.1 Inclusion criteria (CCP)
To develop the research question of this scoping review, the Population, Concept, Context (PCC) strategy was used, following the Joanna Briggs Institute guidelines (Peters et al., 2020).
1.2 Participants
This scoping review will include family caregivers of persons with lower limb amputation, only studies whose family caregivers are over the age of 18 will be included.
1.3 Concept
This scoping review will include all studies that report the needs of family caregivers of persons with lower limb amputation. All type of family caregivers’ needs will be included as concepts. Studies that do not refer to the needs of family caregivers and those that refer only to the needs of the amputee will be excluded.
1.4 Context
This review will include studies involving family caregivers’ inpatients discharged to their homes.
1.5 Types of studies
Regarding the type of evidence, quantitative and qualitative studies, primary studies, systematic reviews, gray literature (books, theses, dissertations, and guidelines), published in indexed sources, that answer the research question will be included. Other types of text, including opinion papers and reports, will be considered in this review. Study protocols will be excluded.
Only studies written in Portuguese, English, and Spanish, with no limit of research time interval, will be included in the review.
1.6 Search Strategy
The search strategy used will be the three-step strategy proposed by the Joanna Briggs Institute (Peters et al., 2020), to find published and unpublished studies that answer the review question. An initial limited search of CINAHL Complete (EBSCO) and MEDLINE Complete (EBSCO) databases was conducted to identify index terms and keywords contained in title and abstract of the articles found. In the second stage, the index terms and keywords identified in the initial review results will be combined in a full search strategy adapted for all databases included. The search strategy will aim to locate both published and unpublished studies in peer-reviewed databases and in grey literature sources. The search strategy will be refined with the help of a librarian. Table 1 shows a full search strategy for MEDLINE complete (EBSCO) database.
Table 1 Search strategy for MEDLINE complete (EBSCO) database
| Database | Query | Results obtained |
| Medline complete (EBSCO) | TI ( (Caregiver* OR "Care Giver*" OR "Carer*") AND ("Lower Extremit*" OR "Lower Limb*" OR "Membrum infer*") AND ("Amputat*") ) OR SU ( (Caregiver* OR "Care Giver*" OR "Carer*") AND ("Lower Extremit*" OR "Lower Limb*" OR "Membrum infer*") AND ("Amputat*") ) OR AB ( (Caregiver* OR "Care Giver*" OR "Carer*") AND ("Lower Extremit*" OR "Lower Limb*" OR "Membrum infer*") AND ("Amputat*") ) | 38 |
Search strategies of all included databases will be presented in the final report. The databases to be searched included: MEDLINE Complete (EBSCO), CINAHL Complete (EBSCO), Mediclatina (EBSCO), Science Direct (EBSCO), Scielo (EBSCO), Academic Search complete (EBSCO), OpenAire (EBSCO), Scopus, Web of Science and Trip. Grey literature to be searched includes Open Access Scientific Repositories of Portugal - RCAAP (via EBSCO) and Google Schoolar.
In the third step, a search and analysis will be performed using the reference list of all included studies, so that potential studies can be identified as potential to be added to the search.
1.7 Study selection
Following the full search, all citations results will be uploaded into reference manager software Mendeley Desktop (version 1.19.8.) and duplicates will be removed. Study selection will be developed in two stages. In the first stage, titles and abstracts will be screened by two independent researchers against the inclusion criteria to determinate the relevance of the study. The full article of selected studies will be reviewed against the inclusion criteria by two researchers to verify their relevance to the review. The reasons of exclusion of the full-text papers that did not meet the inclusion criteria will be recorded and reported in this scoping review. Any disagreements that arise between researchers at each stage of the selection process will be resolved through discussion or by third researcher. Since this is a scoping review, the methodological quality of the selected studies will not be analyzed (Peters et al., 2017).
The results of the study selection will be reported using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram (Page et al., 2021).
1.8 Data Extraction
Data will be extracted from included studies in the scoping review by two independent researchers. Using a data extraction tool developed by the researchers based on standardized data extraction tool from Joanna Briggs Institute. The tool is shown in Table 2.
Table 2 Data extraction grid
| Data extraction | 1 | 2 | 3 |
| Author(s) (year) Country | |||
| Objective/Research question | |||
| Population / Sample | |||
| Methodology (Methods) | |||
| Identified needs | |||
| Study context | |||
| Main conclusions | |||
| Other comments |
The data extraction tool may need some refinements during the data extraction process and according to the needs observed by the researchers. The relevant data extracted from the articles included in the review will be extracted by two independent researchers and grouped according to the established categories. If questions arise or additional information is needed, the first author of the studies will be contacted.
In case of disagreement between the researchers regarding the included studies, a third researcher will be consulted.
1.9 Data synthesis
Extracted data will be presented in narrative format and presented in charts and/or graphs to facilitate understanding, according to the purpose of the review. This step will be developed by two independent researchers, in case of disagreements a third researcher will be included.
To answer the aim and the research question “what are the needs of family caregivers of the person with lower limb amputation?”, the following data will be analyzed (Table 3).
2. Results
In this step, will be presented the characteristics of the studies included in this review about the needs of family caregivers of the person with lower limb amputation in the context of discharge to home. The results obtained may provide data to identify the most emerging needs of the family caregivers in caring for the person with lower limb amputation.
Caregivers face constant challenges; to experience a transition to the new role in a healthy way, they need to organize and prepare themselves adequately. To maintain an adequate level of health and well-being ensuring continuity of care of a dependent person, is important to coordinate with health professionals, particularly nurses, to meet their needs (Melo et al., 2014).
The process of care provision is dynamic, complex, and arduous, with variations in terms of feelings and needs of both caregivers and care recipients (Sarmento et al., 2010).
This review aims to identify possible gaps in the literature and research on the intended theme, by determining which areas require a deeper or more complete analysis.
Conclusion
To awaken the caregiver's interest in learning, it is important to know the needs so that the problems or cases are well aligned with reality. Health promotion should focus not only on the physical aspects of the disease, but also on the empowerment of the person to become an active agent in managing their health and that of the person they care for. In this context, it is essential to identify needs that go beyond disease deviations (Freire et al., 2021).
With this review, we expect to synthesize the knowledge on needs of family caregivers of people with lower limb amputation, contribute to the knowledge on the topic and indicate gaps in the area, thus highlighting the need for further clinical research.
