FORMAL SUPPORT FOR CAREGIVERS OF PEOPLE WITH FUNCTIONAL DEPENDENCE AT HOME: A SCOPING REVIEW

Oliveira, Stefanie Griebeler; Zillmer, Juliana Graciela Vestena; Cordeiro, Franciele Roberta; Fonseca, Michele Rodrigues; Mello, Fernanda Eisenhardt de; Schiller, Graziela da Silva; Viegas, Aline da Costa; Pinto, Raquel Oliveira

doi:10.1590/1980-265X-TCE-2024-0051en

Brasil

Texto & Contexto - Enfermagem

Sumário Anterior Atual Seguinte

Sumário

Literature Review • Texto contexto - enferm. 34 • 2025 • https://doi.org/10.1590/1980-265X-TCE-2024-0051en linkcopy

FORMAL SUPPORT FOR CAREGIVERS OF PEOPLE WITH FUNCTIONAL DEPENDENCE AT HOME: A SCOPING REVIEW

APOYO FORMAL A CUIDADORES DE PERSONAS CON DEPENDENCIA FUNCIONAL EN EL HOGAR: REVISIÓN DEL ALCANCE

Authorship SCIMAGO INSTITUTIONS RANKINGS

ABSTRACT

Objective: to map formal support and its results for informal caregivers of people with functional dependence at home.

Method: a scoping review based on the 2020 JBI Manual. The PubMed, LILACS, BDENF, WoS, Scopus, CINAHL and ScieLO databases were used. Data collection took place in February 2022 and was updated in June 2024. Studies on support for informal caregivers of functionally dependent individuals, published in English, Spanish or Portuguese from 2002 onwards, were included. Reviews, letters to the editor and abstracts published in annals were excluded. The studies were organized and screened in EndNote by two independent reviewers, who answered the review question by reading the titles and abstracts. Data from 58 studies were organized in Excel spreadsheets and submitted to directed content analysis using NVivo.

Results: the forms of formal support correspond to strategy, psychoeducational intervention, psychosocial intervention and psychotherapeutic intervention, carried out in person, hybrid or online, individually and/or in groups, by nurses, occupational therapists and social workers. These produce types of support, such as emotional, informational, instrumental, positive social interaction and affective, which can increase caregivers’ and other’s self-efficacy, reducing stress, anxiety and depression.

Conclusion: it is concluded that the forms of support, information and communication technologies are tools that promote and facilitate the support provided to caregivers, since they allow health professionals to access caregivers.

DESCRIPTORS:
Social Support; Caregivers; Home Care Services; Respite Care; Home Nursing; Review

RESUMO

Objetivo: mapear os apoios formais e seus resultados ao cuidador informal de pessoas com dependência funcional no domicílio.

Método: revisão de escopo, baseada no Manual Institute Joanna Briggs de 2020. Utilizou-se como base de dados PUBMED, LILACS, BDENF, WoS, Scopus, CINAHL e SCIELO. A coleta de dados ocorreu em fevereiro de 2022 e foi atualizada em junho de 2024. Foram incluídos estudos sobre apoio/suporte ao cuidador informal de pessoas dependentes funcionalmente, publicados em inglês, espanhol ou português a partir do ano de 2002; excluídas revisões, carta ao editor e resumos publicados em anais. Os estudos foram organizados e triados no programa Endnote, por dois revisores independentes, que respondiam à pergunta da revisão, a partir da leitura dos títulos e resumos. Os dados de 58 estudos foram organizados em planilhas do Excel e submetidos à análise de conteúdo dirigido mediante auxílio do programa NVivo.

Resultados: As formas de apoio formal correspondem a estratégia, intervenção psicoeducacional, intervenção psicossocial e intervenção psicoterapêutica, realizadas de forma presencial, híbrida ou online, individual e ou grupais, por enfermeiros, terapeutas ocupacionais e assistentes sociais. Essas produzem tipos de apoios, emocional, informacional, instrumental, interação social positiva e afetivo, que podem aumentar a autoeficácia do cuidador e outros reduzem o estresse, a ansiedade e a depressão.

Conclusão: Conclui-se que nas formas de apoio as tecnologias da informação e comunicação são ferramentas promotoras e facilitadoras do apoio desenvolvido ao cuidador, uma vez que, permitem o acesso dos profissionais de saúde aos cuidadores.

DESCRITORES:
Apoio social; Cuidadores; Serviços de assistência domiciliar; Cuidados intermitentes; Assistência domiciliar; Revisão

RESUMEN

Objetivo: mapear el apoyo formal y sus resultados para cuidadores informales de personas con dependencia funcional en el hogar.

Método: revisión de alcance, basada en el Manual JBI 2020 PubMed, LILACS, BDENF, WoS, Scopus, CINAHL y ScieLO. La recopilación de datos se realizó en febrero de 2022 y se actualizó en junio de 2024. Se incluyeron estudios sobre apoyo de cuidadores informales a personas funcionalmente dependientes, publicados en inglés, español o portugués a partir de 2002. Se excluyeron las revisiones de carta al editor y los resúmenes publicados en. actas. Los estudios fueron organizados y revisados en EndNote por dos revisores independientes, quienes respondieron a la pregunta de revisión leyendo los títulos y resúmenes. Los datos de 58 estudios se organizaron en hojas de cálculo de Excel y se sometieron a un análisis de contenido específico utilizando NVivo.

Resultados: las formas de apoyo formal corresponden a estrategia, intervención psicoeducativa, intervención psicosocial e intervención psicoterapéutica, realizadas de forma presencial, híbrida u online, individual y/o grupal, por enfermeros, terapeutas ocupacionales y trabajadores sociales. Estos producen tipos de apoyo, como el emocional, informativo, instrumental, de interacción social positiva y afectivo, que pueden aumentar la autoeficacia de los cuidadores y de otras personas, reduciendo el estrés, la ansiedad y la depresión.

Conclusión: se concluye que las formas de apoyo que las tecnologías de la información y la comunicación son herramientas que promueven y facilitan el apoyo desarrollado para los cuidadores, ya que permiten el acceso de los profesionales de la salud a los cuidadores.

DESCRIPTORES:
Apoyo Social; Cuidadores; Servicios de Atención de Salud a Domicilio; Cuidados Intermitentes; Atención Domiciliaria de Salud; Revisión

INTRODUCTION

Functional dependence is seen as the need for partial or total assistance in carrying out activities of daily living¹, resulting from aging and chronic conditions. Nowadays, people are living longer, and the global forecast for 2030 is that one in six people will be 60 years of age or older. This population group is expected to increase from 1 billion in 2020 to 1.4 billion in 10 years. Aging therefore represents a challenge for health systems, as it brings with it chronic diseases and disabilities².

In this context, short- and long-term care is established, considering the need to reorganize care practices in order to promote healthy aging and support caregivers¹^,³. When the condition of dependence and the need for intense care due to illness are established, caregivers become fundamental³.

However, being a caregiver is a task that requires physical and emotional efforts that can cause burden. Therefore, forms of support are fundamental and necessary for caregivers’ continuity of care and well-being³. An informal caregiver is a family member, or not, who provides care to a dependent person, voluntarily, with actions that aim to physically or mentally assist the person to perform daily life tasks and self-care⁴.

Two systematic reviews addressed interventions for caregivers and their possible classification. The first identified psychoeducational, psychotherapeutic and psychosocial models⁵. The second identified interventions that reduce the burden of care for caregivers of stroke survivors, with emphasis on psychoeducational interventions, which demonstrated positive results in the psychological, physical and social spheres, in care qualification and caregivers’ knowledge⁶.

In this study, formal support was considered as that provided by public and private institutions and services that provide care, assistance and support to individuals and society⁷. In this regard, interventions and strategies can be identified. Intervention consists of a set of means (physical, human, financial and symbolic) organized in a specific context, in a given period, to produce goods or services aiming to modify a situation⁸. Strategy is a formulated and appropriate action to achieve the established challenges and objectives⁹.

When developed, interventions and strategies result in different types of social support: 1) instrumental, which corresponds to material or practical help; 2) emotional, which concerns affective relationships, listening, understanding and care; 3) informational, which refers to guidance, suggestions and advice; 4) affective, which involves demonstrations of affection and love; and 5) positive social interaction, which produces stress relief through leisure¹⁰.

Given the above, it is justified to map the forms of formal support for caregivers of dependent individuals at home with the intention of using them in care, thus promoting quality of life and allowing continuity of care for dependent individuals. The difference between this scoping review and systematic reviews already conducted goes beyond mapping the forms, explaining the type of support generated by each of them. Therefore, the objective was to map the formal support and its results for informal caregivers of functionally dependent individuals at home.

METHOD

This is a scoping review¹¹, registered in the Open Science Framework (osf.io/qp3br)¹², methodologically structured by the JBI - Manual for Evidence Synthesis¹³, with data from articles, institutional documents, theses and dissertations. However, given the limited space, there is a summary of the results identified in article analysis. In the first stage, the review objectives and question were defined, following the PCC strategy (Population - home caregivers; Concept - forms of support organization; and Context - home, home care): what formal support is available to informal caregivers of people with functional dependence at home?

Original articles describing formal support for informal caregivers of people with functional dependence at home and their respective results, published in English, Spanish or Portuguese between 2002 and 2022, with updates in 2024, were included. The time frame was defined based on the criterion of analytical feasibility given the high number of articles, in addition to the fact that this period encompasses the emergence of public policies and associations that include families and family caregivers as among the entities assisted by health teams and services. In Brazil, for instance, the reactivation of the Brazilian Society of Family and Community Medicine, the publication of the Brazilian National Humanization Policy in 2003¹⁴ and the Brazilian National Primary Care Policy in 2006¹⁵ stand out. The forms of formal support correspond to psychoeducational, psychosocial and psychotherapeutic strategies and interventions. Studies that do not address concepts relevant to achieving the objective, reviews, repeated studies, experience reports, protocols, pilot studies, letters to the editor, abstracts published in annals were excluded.

Between February and March 2022, the articles were accessed by a librarian and, in June 2024, the authors of the article carried out the update, considering the same databases and the respective search strategies, as shown in Chart 1. It is worth noting that EndNote was used to remove duplicate files.

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Chart 1 -
Strategies used in the search. Pelotas, RS, Brazil, 2024.

In the selection stage, the titles and abstracts were first read, observing the inclusion criteria, and then the full text was read. Fivty-eight articles were eligible, as shown in Figure 1 ¹⁶^-⁷³.

Figure 1 -
PRISMA-ScR¹³ flowchart.

Between July and October 2022, the team prepared a guidance manual for data extraction, consisting of four sections: 1) general recommendations for collectors; 2) materials required for extraction; 3) definition of some concepts; 4) data extraction form in the Google research management application. The Excel spreadsheets generated from the data extraction contained information on the reference, country, research design, health problem of the person receiving care, a description of the form of support, with details of the location of development, number of people benefited, in order to obtain information on whether the support was individual or in groups, and the main results.

Nvivo was used to organize and manage the extracted data, and describe the form of support and main results. Directed content analysis was applied⁷⁴. In this approach, the analysis began with the construction of a theoretical framework/concepts on forms of support and types of support that guided the elaboration of initial codes, subcategories and categories. The codebook was composed of the concepts: strategy⁹; psychoeducational intervention; psychosocial intervention and psychotherapeutic intervention⁵; and types of support (emotional, informational, instrumental, positive social interaction and affective)¹⁰. Afterwards, the data were read to immerse and understand the whole. Then, the data were read line by line, and the excerpts were coded from the codebook. During the interpretation, these were reorganized and grouped to form predefined categories such as formal support. Two researchers from the team who had experience/expertise in support and types of social support and qualitative research participated in this stage. The results were presented according to PRISMA-ScR¹³, and figures and tables were created for the synthesis. Since this was a study that used publicly available data and did not involve human beings, there was no need for evaluation by a Research Ethics Committee.

RESULTS

The articles were published between 2002 and 2024, with 2016 and 2019 standing out as having the highest number of publications. Regarding the approach, 35 were quantitative; 13 were qualitative; three were quantitative and qualitative; six were mixed methods; and one did not have the information. Among the countries, the most frequent was the USA, with 26 publications, followed by eight in the United Kingdom, and six in Australia and Canada. Two were carried out in three or more countries. Of the 58 publications, 16 (28 %) were on strategy, 28 (48 %) were on psychoeducational interventions, 13 (22 %) on psychosocial and 1 (2 %) on psychotherapeutic. Chart 2 presents the formal support, the description and the type of support generated.

The strategies were aimed at caregivers of people with dementia²³^,²⁷^,⁵⁶^,⁶⁵^,⁶⁸, Alzheimer’s⁴⁷, general chronic conditions³²^,⁴⁶^,⁴⁹^,⁶³, amyotrophic lateral sclerosis⁷³, and some were not specified²⁸^,²²^,³⁴^,⁶⁶^,⁶⁹. Psychoeducational interventions were aimed at caregivers of people with dementia²⁹^,³⁸^,⁴²^,⁵¹^,⁵²^,⁴³^,⁵⁰, Alzheimer’s¹⁹^,²⁰^,²⁶^;⁶², stroke²⁵^,⁵⁵^,⁵⁸^,⁶⁷, general chronic conditions¹⁶^,¹⁷^,³³^,⁵⁴, Alzheimer’s and dementia³⁵^,⁴⁸^,⁴⁴^,⁴⁵, neuromotor disease³¹, cognitive impairment⁶⁴, diabetes mellitus⁷¹, and one unspecified³⁰^,⁷⁰. Psychosocial interventions were aimed at caregivers of people with Alzheimer’s⁴⁰^,⁴¹^,¹⁸^,²⁴^,⁵⁷^,⁵³, dementia³⁹^,⁷², Alzheimer’s and dementia³⁶, general chronic conditions²¹^,³⁷, functional dependence⁶¹, and stroke⁵⁹. Psychotherapeutic interventions were carried out with caregivers of people with cancer⁶⁰.

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Chart 2 -
Description chart of formal support. Pelotas, RS, Brazil, 2024.

DISCUSSION

This scoping review allowed us to identify forms of support organization under strategic modality such as continuous action and intervention with development in stages, indicating its beginning, middle and end. The intervention, depending on its objective, can be psychoeducational, psychosocial or psychotherapeutic.

The strategy modality was characterized as an action that makes it possible to generate forms of support and assistance to caregivers on an ongoing basis, through services and programs, in order to alleviate the burden. Based on these, the types of support that can be generated are emotional, informational, instrumental, positive social interaction and affective.

The strategy, in this understanding of continuity, is suggested in an integrative review study⁷⁵, which deals with the impact of care on caregivers’ musculoskeletal system, in which the importance of physical activity performed continuously as an educational strategy was highlighted, with guidelines to guide the practice of physical exercises or effective movement therapies for pain in the neck, shoulders and knees of caregivers.

Psychoeducational intervention is an educational action that involves developing coping strategies based on identifying caregivers’ needs regarding the development of care for others, self-care, self-management, and self-efficacy. It is developed with a pre-established time frame, number of activities, resources, materials, and various instruments. The support provided includes emotional, informational, instrumental, and positive social interaction.

Psychoeducational interventions are powerful because they increase information about patients’ situation, empowering and improving caregivers’ ability to provide care, making them feel safe and self-confident⁷⁶. Educating caregivers allows them to better manage and control the situation, in addition to helping them prepare for the possible death of their family member. Therefore, social support is essential to improve the perception of quality of life, so professionals must help caregivers to strengthen their family networks and define roles within the family dynamics to reduce the burden. In an interdisciplinary manner, caregivers must be guided and accompanied in the care of their family member to reduce the psychological and emotional impact on their quality of life⁷⁷.

A review study⁷⁸ stated that health professionals prefer psychoeducational interventions because of the contributions they generate, including better understanding of the subject and preparation for the situation. Moreover, they allow caregivers to acquire knowledge about care, learn to use coping strategies in negative situations, improve their self-efficacy and self-esteem, thus reducing their stress.

Psychosocial interventions consist of actions and techniques that use cognitive, behavioral and social mechanisms. They enable the development of skills, knowledge and crisis coping, in addition to mobilizing the search for support, both within the family and in the community, thus strengthening the available network. The actions and techniques include individual and/or family counseling. The support generated is emotional, informational, instrumental and positive social interaction.

In a scoping review that sought benefits of psychosocial interventions, it was identified that psychosocial interventions are a useful resource for informal caregivers of people with functional dependence, as they result in statistically significant reductions in stress and caregiver burden while decreasing the feeling of isolation⁷⁹. The same benefits obtained with this type of intervention were found in an integrative review,⁷⁶ as they present the potential for knowledge exchange, being promoted in groups, and enable better coping with problems, as they emerge as a support network for caregivers, increasing confidence in caring for others and coping with problems.

A systematic review that looked for benefits of psychosocial interventions for caregivers of people with dementia also found that this type of intervention may be beneficial for promoting the mental health of informal caregivers of people living with dementia. Cognitive-behavioral approaches show promising results, especially with regard to reducing depressive symptoms⁸⁰.

Finally, psychotherapeutic interventions are therapies that can be performed at home or in a health service, focusing on reducing stress, anxiety and other emotional issues. They can occur through spirituality, as a care practice, consisting of an action that maintains well-being and increases caregivers’ ability to cope and strengthen their caregiving skills. The support generated was emotional, reducing anxiety, psychological discomfort, burden and depression.

Among the advantages of using psychotherapeutic interventions is the fact that they are carried out individually, allowing us to look at caregivers’ singularities⁷⁶. A study⁸¹ with psychologists investigated home psychotherapy and demonstrated that it provides better information about the relational network of the person being treated as well as the possibility of intervening directly with family members involved in the problem through preventive guidance, when applicable.

This scoping review highlights hybrid forms and virtual environments for the use of counseling, which consists of welcoming, building bonds and interaction, effective listening and the use of technologies, whether by telephone, computers connected to the internet, robots, remote monitoring, which are easily accessible to health professionals and caregivers, in addition to reducing costs for health services and caregivers. These organizations⁸² have achieved promising results, with the potential for expansion and incorporation into health systems, aiming at benefits based on the best evidence.

It is seen that support is essential for coping with chronic conditions, such as emotional, instrumental, informational, financial and spiritual support. In a study⁸³ carried out with older adults, it was identified that those without depressive symptoms had a greater perception of emotional support and positive social interaction. Therefore, support must be constant so that caregivers feels capable and motivated to continue providing care. Emotional support⁸⁴ can be seen as a protective factor on caregivers’ quality of life, mitigating negative aspects of care.

In a study, the importance of equipping caregivers with the necessary tools during hospitalization was highlighted so that they can develop skills and confidence to perform home care⁸⁴. In addition, providing information based on scientific evidence improves the care provided to older adults and caregivers’ quality of life⁸⁵.

Furthermore, caregivers who are well informed about the effects of burden on their mental health are able to identify the sources of stress and are able to ask for and accept help from others. When caregivers understand that they are not the only person experiencing this situation and that they can receive help from family and friends, they can become stronger and less overwhelmed⁸⁶. In this way, emotional support becomes essential for caregivers.

Positive social interaction is seen as effective in reducing caregiver burden. Identifying significant members of the social support network is essential, since these are the people who can provide support. Involving caregivers in activities such as walking groups, stretching, manual activities, and workshops can be useful in increasing the number of relationships⁸⁷. Actions related to social support can be useful in improving quality of life.

The number of people living with types of dementia, including Alzheimer’s, is growing and it is estimated that more than 55 million people are currently living with dementia⁸⁸. This may explain the greater frequency, in this scoping review, of forms of support targeted at caregivers of people with dementia and Alzheimer’s.

The limitations of this review include the restriction of languages to English, Spanish and Portuguese. This requires relativizing the statements made, considering that older studies and those published in countries where family caregivers are important in the home, such as Eastern countries, may not have been retrieved and analyzed. Although an attempt was made to develop a comprehensive search strategy, it is possible that some relevant studies were missed.

Another limitation, even with the use of descriptors and MeSH terms in the search strategies, is due to the number of titles initially identified in the databases and their significant reduction at the end, since many studies only mentioned support as a caregiver need, without detailing them. Thus, searching and selecting studies only based on titles, abstracts and subject headings may have missed relevant documents. Finally, 31 articles not made available in full were not included because they had restricted access, upon payment.

Unlike systematic reviews, scoping reviews do not incorporate a quality assessment of studies for their inclusion, so the studies included in this review were not assessed for their scientific rigor.

CONCLUSIONS

This scoping review allowed us to map the forms of formal support and the types of support for home caregivers of functionally dependent individuals in Brazil and other countries. In the forms of support, whether strategies or interventions, information and communication technologies emerged as tools that promote and facilitate the support developed with caregivers, and were mostly carried out by nurses, occupational therapists and social workers.

Group or individual interventions using information and communication technologies via telephone, computers connected to the Internet, robots, and remote monitoring facilitate access by health professionals to caregivers and allow interaction between them. This expands and strengthens support for caregivers, considering the limited time they have to themselves.

It is believed that the results can guide actions that professionals working in home care services can invest in. The strategies can be offered in long-term care situations, such as those provided to people with dementia, as they are organized and offered continuously.

Psychoeducational, psychosocial and psychotherapeutic interventions have been shown to be beneficial for caregivers and patients, and can be incorporated with specific objectives, as they are characterized by having a beginning, middle and end. These interventions incorporated into care plans qualify them and provide support directly to those who care and indirectly to those who are cared for, in addition to promoting health education, coping strategies and strengthening support networks.

Among the gaps identified were: the lack of discussion of gender, race and ethnicity; the time available for caregivers to access formal support; the generalization of some forms of support, without considering the specificity of the chronic condition of the person with functional dependence; and Brazilian studies with formal support for caregivers, considering the health system of that country.

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» https://doi.org/10.1590/1981-22562023026.230032.pt
88. World Health Organization (WHO). Global status report on the public health response to dementia [Internet]. 2021 [cited 2024 Dec 05]. Available from: https://www.who.int/publications/i/item/9789240033245
» https://www.who.int/publications/i/item/9789240033245

NOTES

ORIGIN OF THE ARTICLE
Extracted from scoping review research approved in the CNPq/Decit/SCTIE/MS Call for studies of systematic reviews, scoping reviews and evidence syntheses for policies focusing on the areas of home care, adolescent health and health surveys n.^o 16/2021. Registered in the Open Science Framework12, with a methodological structure proposed by the JBI - Manual for Evidence Synthesis13, with data only from the included article-type documents.
FUNDING INFORMATION
CNPq/Decit/SCTIE/MS call for studies of systematic reviews, scoping reviews and evidence syntheses for policies focusing on the areas of home care, adolescent health and health surveys n.o 16/2021.
TRANSLATED BY
Letícia Belasco.
DATA AVAILABILITY
The data that comprise the results of this study are still being processed for other products, such as educational care technologies and scientific articles. For this reason, they are available upon request to the corresponding author, Fernanda Eisenhardt de Mello, in order to preserve the originality of other publications.

Edited by

EDITORS
Associated Editors: Bruno Miguel Borges de Sousa Magalhães, Maria Lígia Bellaguarda.

Editor-in-chief: Elisiane Lorenzini.

Data availability

The data that comprise the results of this study are still being processed for other products, such as educational care technologies and scientific articles. For this reason, they are available upon request to the corresponding author, Fernanda Eisenhardt de Mello, in order to preserve the originality of other publications.

Publication Dates

Publication in this collection
22 Sept 2025
Date of issue
2025

History

Received
03 Apr 2024
Accepted
04 Dec 2024

This is an open-access article distributed under the terms of the Creative Commons Attribution License

Data sources	Search strategies
LILACS	1^st) Apoio Social AND Cuidadores AND Serviços de assistência domiciliar [Subject descriptor] 2^nd) Cuidados intermitentes AND Cuidadores AND Assistência Domiciliar
SciELO	1^st) Apoio Social AND Cuidadores AND Serviços de assistência domiciliar [All indices] 2^nd) Cuidados intermitentes AND Cuidadores AND Assistência Domiciliar 3^rd) Apoio Domiciliar AND cuidadores
BDEnf	1^st) Apoio Social AND Cuidadores AND Serviços de assistência domiciliar [Subject descriptor] 2^nd) Cuidados intermitentes AND Cuidadores AND Assistência Domiciliar
PubMed	1^st) Social support [MeSH Terms] AND Caregivers [MeSH Terms] AND Home care services [MeSH Terms] 2^nd) Respite care AND Caregivers AND Home care services NOT Hospital
Web of Science	1^st) Social support [Todos os campos] AND Caregivers [Todos os campos] AND Home care services NOT Hospital 2^nd) Respite Care AND Caregivers AND Home Care Services NOT Hospital
Scopus	1^st) Social support [Keywords] AND Caregivers [Keywords] AND Home care services [Keywords] AND NOT Hospital 2^nd) Respite Care AND Caregivers AND Home Care Services NOT Hospital
CINAHL	1^st) Social Support AND Caregivers AND Home Care Services NOT Hospital 2^nd) Respite Care AND Caregivers AND Home Care Services NOT Hospital

Description	Types of support
Formal support: strategy
In-person³²^,³⁴^,³⁶^,⁶³^,²³^,²⁷^,²⁸^,⁴⁶^,⁶⁵^,⁶⁹^,⁷³
Respite services alleviate the burden on caregivers according to their needs, offering additional care with a volunteer who will temporarily replace them³⁶, allowing them to carry out recreational and daily activities⁶³^,⁷³. They can offer transportation to and from home, provision of meals, hydration, dressings and other services³⁴.	Emotional support: relief from burden³⁴^,³⁶^,⁶³, as it reduces the time invested in coping with problematic behaviors, improving the relationship between caregivers and patients³⁶^,⁷³. Instrumental support³²^,³⁴^,⁶³: development of skills, such as self-efficacy for care³²^,³⁴ and the ability to entrust care to another, i.e., delegating one’s actions to the volunteer⁶³, replacing caregivers so that they can rest or meet other demands of life, carrying out activities such as cleaning, organizing the house, preparing meals, managing the needs of people with amyotrophic lateral sclerosis⁷³.
Care center associated or not with a support program: offering consultancy, case management, social activities and outings. Teams with psychologists and geriatric physicians are part of these services²³.	Emotional support: exchange between peers in groups. Informational support: access to topics of interest. Instrumental support: caregiver rest. Positive social interaction support: participation in recreational activities²³.
Rural support service: assists more remote communities, run by nurses who manage cases²⁷.	Emotional support: reduces stress and promotes exchanges in groups. Informational support: access to topics of interest. Instrumental support: demonstration of strategies for caregivers’ tasks and provision of rest²⁷.
Home hospice: multidisciplinary team, especially physicians and nurses, that offers actions such as transferring patients home and care shifts for caregivers to rest or carry out other activities of their choice⁴⁶.	Emotional support: relief from burden, tranquility and appreciation, feeling of normality in the family, because, by distancing themselves from care, caregivers could focus on other points. Informational support: access to topics on coping and available services. Instrumental support: skills and abilities developed from observation of nurses’ practice with increased confidence in the use of equipment⁴⁶.
Social assistance services: may offer day centers, rest services and home care⁶⁵.	Informational support: providing knowledge about the condition⁶⁵.
Interaction with robot: provision of a 30 cm tall humanoid robot whose functions are (1) interactive modalities, (2) calendar planning and task reminders, (3) promoting a healthy lifestyle and (4) puzzle games⁶⁹.	Emotional support, positive social interaction and affection: improvement in the relationship between caregivers and care recipients and the feeling of having a new member in the family⁶⁹.
Hybrids²²^,⁴⁹^,⁵⁶
Home services: multidisciplinary team with nurses, occupational therapist and social worker. Actions include home visits and individual care plans²⁸.	Emotional support: reducing caregiver burden²⁸.
Grouping of interventions: multidisciplinary team, with nurses, social workers and occupational therapists, which offers actions such as individual counseling according to needs - ad hoc counseling by telephone, identification of resources in the community and environmental modifications in homes⁵⁶.	Informational support: topics of interest and contacts available to meet needs. Instrumental support: practical application of recommended strategies, such as increased safety and modification of the home environment as well as the use of adaptive equipment⁵⁶.
Coaching services: actions such as problem-solving, advocacy, monitoring and guidance through home visits and by telephone²².	Emotional support: respite from care to increase time for oneself, feeling valued by the care and concern shown by professionals and formation of a bond. Informational support: access to topics of interest. Instrumental support: development of skills for budget management, hiring a caregiver and decision-making²².
Closed health network: developed in cooperation by municipalities, with nursing supervision, offering computer-mediated communication. ICT† was used in the form of a telephone exchange, platform, forum and in-person meetings⁴⁹.	Emotional support: optimism, motivation and strength to continue providing care. Informational support: access to topics of interest and motivation to share knowledge among peers. Instrumental support: receiving assistance to fill out electronic forms. Support for positive social interaction: empathy, empowerment, strengthening relationships, future planning and sharing good news; Affective support: demonstration of concern among peers, empathetic messages, providing compassion, comfort and consolation⁴⁹.
Remote monitoring: by videos or sensors⁶⁶, global positioning system⁶⁸.	Instrumental support: from real-time notifications to decision-making⁶⁶. Emotional support: reducing burden and increasing security and connection⁶⁸.
Formal support: psychoeducational interventions
Groups¹⁷^,³³^,³⁵^,⁵⁰
Group Program³⁵: developed by occupational therapists, focused on psychological support, education and information to improve coping and care skills, planning for the future in legal, emergency and financial aspects.	Emotional support: increased time for oneself. Informational support: increased knowledge about patients’ condition. Instrumental support: increased needs met. Positive social interaction support: maintenance of social networks³⁵.
Share The Care Group³³: sought to ensure the needs of care recipients and caregivers were met in order to solve problems. The group was developed with caregivers or family, who determined who else could be invited. Some led and organized the meetings.	Emotional support: increased confidence through the assurance that needs were being met³³.
The 90 Minute Group¹⁷: developed by social workers, occupational therapists, physical therapists, nurses and aromatherapy professionals, aimed to promote caregiver self-care in addition to thematic informational education through weekly meetings. Transportation and patient services were provided as needed.	Emotional support: feeling of something in common among participants; validation of feelings by sharing similar experiences; reduction of the feeling of isolation through the space of speaking and listening. Informational support: access to new information and skills. Instrumental support: development of patience. Support for positive social interaction: provision of refreshments upon arrival from the meeting and possibility of a break from care when leaving home¹⁷.
Support Group⁵⁰: carried out by nurses, geriatric psychiatrist, psychologist, yoga instructor and group facilitators, aimed to provide emotional support, counseling and normative support. Group meetings were held monthly, with thematic information, discussion among members and provision of space for caregivers.	Emotional support: relief through venting, feeling of understanding and gaining confidence. Instrumental support: practical understanding of specific care issues, with application of knowledge when similar situations arise. Support for positive social interaction: valuing freedom of expression and identifying non-judgment by peers⁵⁰.
Home visits²⁰^,⁴³^,⁶²^,⁶⁷
Environmental Skill-Building Program²⁰: sought to help caregivers reduce the disparity between environmental pressure and personal competency and aimed to provide skills for effective management of the home environment. It occurred in two phases - active and maintenance - which involved four components: 1) thematic education; 2) modifications of the physical dimension; 3) modifications of the task dimension; 4) modifications of the social environment.	Emotional support: reduction of stress, subjective burden and improvement of caregivers’ well-being. Instrumental support: acquisition of knowledge and skills for managing daily challenges and reducing costly environmental stressors²⁰.
24-Hour Home Care Program⁴³: aimed to provide caregivers with an opportunity to be relieved of the task of providing care. The intervention provided temporary care in the home. Patients’ routine remained the same and all activities were recorded in a diary by the staff member for caregivers to access. After this service was offered, the staff member remained available for additional counseling.	Emotional support: reduced pressure from caregivers’ role and reduced burden on social and family life. Instrumental support: reduced desire to institutionalize the person with dementia⁴³.
Home intervention group⁶²: developed by occupational therapists, it aimed to provide psychoeducational intervention with a cognitive focus. The activity occurred according to a schedule with prior agreement with caregivers to make time available weekly. An individual booklet with 25 playful activities was provided.	Emotional support: improved cognitive performance and reduced stress and anxiety⁶².
Nursing Home Care Intervention Post Stroke: developed from three home visits by two nurses, approximately 14, 21 and 30 days after discharge. There is a dialogic process about feelings, doubts and resources available for providing care. The explanations were adapted according to needs⁶⁷.	Informational and instrumental support: increased caregiver autonomy⁶⁷.
Mixed groups and visits⁵⁵
Home Visit Program and Group Program⁵⁵: carried out by nurses, it sought to assess and deal with problems focusing on emotions, information and coping. It consisted of two components: a fixed one, with a predetermined number of sessions and pre-established time intervals; and a flexible one, with individualized themes. The group focused on problem-solving with the presentation of a fictitious case, with subsequent homework to practice resolution in real life.	Home Visit Program and Group Program⁵⁵: carried out by nurses, it sought to assess and deal with problems focusing on emotions, information and coping. It consisted of two components: a fixed one, with a predetermined number of sessions and pre-established time intervals; and a flexible one, with individualized themes. The group focused on problem-solving with the presentation of a fictitious case, with subsequent homework to practice resolution in real life.
Training¹⁶^,⁷⁰
Training and Support Programme¹⁶: developed by massage therapists, the aim was to provide basic massage skills to caregivers of children with disabilities. The training consisted of four stages: the first section included a consultation between caregiver and therapist; the second was developed through an introduction to massage; the third consisted of working with the caregiver-patient dyad for training and application of the technique; and the fourth was related to the techniques being adapted according to specific needs.	Emotional support: improvement of anxiety and depressed mood. Instrumental support: self-confidence in massage-giving skills and management of children’s psychosocial well-being¹⁶.
Massive Open Online Course for Caregivers Amid the COVID-19 Pandemic: course with topics on COVID-19 prevention measures, providing care to dependent people, such as self-care⁷⁰.	Informational support: provided useful and clear information⁷⁰.
Action or care plans³¹^,⁴⁵^,⁶⁴
Family Caregivers Support Agreement⁶⁴: aimed to facilitate partnerships between caregivers and professionals so that the assessment of needs and support services could be negotiated, based on sensitive listening and enabling questions.	Emotional support: development of trust through space for reflection and listening. Instrumental support: power for proactivity and development of an action plan⁶⁴.
Carer Support Needs Assessment Tool³¹: offered by nurses, it aimed to identify caregivers’ needs and develop action plans. During the intervention, conversations were held to discuss the areas of greatest need for support between care advisor and family caregiver. A shared action plan was also developed, which was formulated based on the specific needs of caregivers, moving away from the standard model.	Emotional support: reflections based on questions, as well as recognition of the role of caregiver, in addition to the relationship between care advisor and caregiver that provided opportunities to share difficult experiences. Informational support: access to topics of interest with suggested solutions, information on necessary services, financial assistance, counseling, and links to access resources. Instrumental support: development of communication skills, especially with patients, and also increased time for caregivers to rest with discussion of ways to enable this space, including encouraging them to let more people help them with the task of caring. Support for positive social interaction: encouragement to participate in lunches promoted by the association³¹.
Tailored Caregiver Assessment and Referral⁴⁵: sought to assess the context of home care provision to develop a care plan. Moreover, it aimed to offer a screening mechanism to train caregivers in decision-making. This intervention was developed in six stages: 1) assessment with a standardized form; 2) transfer of information obtained to a summary; 3) following the decision algorithm to identify objectives, methods and resources; 4) consultation with caregivers to review and discuss the results of assessment, goals, methods and resources as well as to issue agreement with care plan; 5) care plan preparation; and 6) follow-up assessment at pre-established intervals.	Emotional support: reducing depression and promoting well-being⁴⁵.
Internet pages²⁵^,²⁹^,⁵⁸
CaringWeb website: organized by nurses, it was identified in two publications²⁵^,⁵⁸: In 2002²⁵, the purpose was to provide support and information through three mechanisms: 1) opportunity for questions and discussion of issues related to nursing care; 2) opportunity for asynchronous contact via email connecting caregivers to both the nursing staff and other participating caregivers; 3) thematic educational information. In the 2008 publication⁵⁸, the objective was to provide support and education. In the reformulation, the website consisted of four components: 1) question for nurses by email; 2) support group via email; 3) tip of the month with personalized information; 4) educational links to reliable websites.	Emotional support: establishing a significant relationship between emotional support and caregiver health²⁵^,⁵⁸.
Dementia Digital Interactive Social Chart²⁹: aimed to offer self-management opportunities for caregivers. The system is organized with starting questions and, upon selection, according to the user’s needs, there is a branching of information. There is also information on the provision of care in the region of residence. Finally, a personal page is created with personalized information regarding needs.	Emotional support: reduction of neuropsychiatric symptoms in caregivers. Informational support: broad access to topics as needed. Instrumental support: with the development of greater competency in the role of caregiver²⁹.
Telephone support⁴⁴^,⁵⁴
Telephone-Based Support Group Intervention⁴⁴: delivered by a social worker, aimed to improve caregivers’ ability to manage daily stressors. Online telesupport groups were provided weekly.	Emotional support: mutual support and validation provided by the group, as well as by sharing emotions and ways of coping, which promoted a reduction in depression, increased hope and improved disposition. Instrumental support: related to helping each other in solving problems⁴⁴.
Telephone support⁵⁴: provided by nurses, gerontologists and service staff, the aim was to provide information and advice regarding patients’ illness and available support. The intervention addressed four dimensions: 1) information and education needs; 2) referral needs to other sources of support; 3) need for emotional support; 4) need for convenient and uncomplicated caregiver support.	Emotional support: appreciation of continuous encouragement, security, recognition of their efforts, as well as appreciation of the immediate response of the attentive professional, feeling of companionship, comfort in being listened to and potential to minimize the effects of isolation and loneliness of caregivers. Informational support: receiving advice, ways or tools to manage and deal with problem situations, in addition to having their need met for information and advice as needed. Instrumental support: development of self-efficacy⁵⁴.
Telephone and CDROM support^‡³⁸
Telephone support plus CDROM‡³⁸: developed by social workers, aimed to provide knowledge related to care and also offer subsidies so that caregivers can perform their tasks more effectively.	Emotional support: reducing burden. Instrumental support: improving self-efficacy to obtain relief³⁸.
CDROM^‡ and guidelines²⁶
Psychoeducational Program²⁶: sought to increase caregiver skills and confidence, create support networks, and increase access to services. The manual includes six thematic sessions, and the CDROM‡ contains educational information about behavioral problems.	Emotional support: improvement of depression. Informational support: increased confidence through the acquisition of knowledge. Instrumental support: structuring domestic activities, use of support services and the possibility of reducing the financial burden²⁶.
Application⁵²^,⁷¹
CareHeroes⁵²: developed by nurses, the app aimed to provide caregivers with a platform to share observations and knowledge. The app is based on family-centered theory, enabling the family to be seen as an expert on the needs of a person with a chronic condition. In addition to this, thematic content and space for discussing caregiver concerns were provided. Links to other resources and services were also available.	Instrumental support: increased confidence in determining solutions⁵².
E-coaching assessment GROW: provides videos with guidance, information and options on the family’s ability to recognize problems, make decisions, care for people with diabetes mellitus, modify the environment and use health facilities⁷¹.	Instrumental support: improved the ability to care for people with diabetes and decision-making⁷¹.
Navigation team service⁴²
Care ecosystem⁴²: provided by a team of navigators and specialized staff, consisting of nurses, social workers and pharmacists. It aimed to provide personalized support and standardized education, by tracking immediate needs of caregivers via telephone and internet via email.	Emotional support: reduction of depression and caregiver burden. Instrumental support: reduction in the rate of emergency room visits and increased self-efficacy⁴².
Hybrid psychoeducational interventions.¹⁹^,³⁰^,⁴⁸^,⁵¹
Resources to Enhance Alzheimer’s Caregiver Health for Telephone-Linked Care¹⁹^,⁵⁰: hybrid modality, although in its first version it was remote¹⁹, which contained several components, specially developed remotely, from an automated telecare system, with an interactive voice response system. The main purpose was to help caregivers manage the disruptive behaviors of people with Alzheimer’s. The system consisted of a telephone and a computer that put caregivers in contact with professionals. Among the activities provided was a weekly conversation with caregivers and the following calls assessed the response in relation to ways of solving problems. In addition, there was a personal mailbox, group telephone calls for personal support to caregivers and a rest activity.	Emotional support: reduction of stress, depression and anxiety levels¹⁹.
Resources to Enhance Alzheimer’s Caregiver Health for Telephone-Linked Care⁴⁸: aimed to improve health and identify areas of risk for caregivers through individual educational sessions in person and telephone support groups. Educational materials and a guide to community services were also provided.	Emotional support: reduction in the number of caregivers at risk for clinical depression, reduction in depression and burden, and less discomfort with emotional distress. Informational support: improvement in knowledge about care; Instrumental support: receiving time off to help with household or care tasks⁴⁸.
Caregiver skill building intervention⁵¹: developed by nurses and social workers, also offered in a hybrid format, aimed to improve caregiver skills, through groups and telephone consultations, in which skills and content were discussed.	Emotional support: reducing caregivers’ suffering when dealing with the agitation of the person with dementia. Instrumental support: improving self-efficacy in the ability to manage patients’ behavior over time⁵¹.
Tyze Personal Networks³⁰: configured as a network, it sought to support caregivers, friends and family to coordinate care. It also aimed to share information and communicate about care situations and clarify information regarding caregivers’ doubts. The network has multiple tools, such as a calendar, scheduling, file storage, sending messages and creating tasks, as well as posting stories and photos.	Emotional support: feeling that they were not alone. Informational support: sharing successful ways of caring, clarifying information, equipment needs, updating health status, changes in medication and resources provided in the community. Instrumental support: improving communication methods and scheduling home visits³⁰.
Formal support: psychosocial interventions
ICT-based pages^†³⁷
SafetyNet³⁷: a website with a multi-municipal support network that seeks to support caregivers by increasing their knowledge and creating support networks. It has two sub-networks, one aimed at caregivers of people with dementia or stroke§, and the other at caregivers of children and adolescents with disabilities. The topics cover diagnostics, social services and public rights geared to the needs of each group. There are links to homepages, an online forum and communication via webcam and telephone.	Emotional support: importance of giving and receiving emotional support, perception of peers in the support network compared to the family itself and perception of peers in the network as family. Support for positive social interaction: organization of excursions or parties, friendships, regular meetings, ease of communication with people and in-person meetings to leave the house³⁷.
Telehealth³⁹^,⁵⁷
TeleFamilies³⁹: telehealth with the purpose of strengthening the support network, reducing emotional and practical demands. It seeks to develop coping skills in three stages: counseling and assessment of needs; group family counseling sessions with caregiver; and individual counseling to consolidate the achievements and learnings from the meetings.	Emotional support: improvement in caregivers’ mood, reduction in depressive symptoms, reduction in the burden of seeking services for their family member with dementia, due to ease of access, through telehealth intervention³⁹.
FamTechCare⁵⁷: telehealth that allows video recording of challenging situations and behaviors of patients with dementia or Alzheimer’s. The videos are sent to the team (nurses, geriatric psychiatrists, social workers and psychologists) for assessment and feedback.	Emotional support: reduction of depression. Instrumental support: increased competency to perform care and guidance on maintenance of usual utensils, identified in the videos, so as not to confuse or stress patients⁵⁷.
Counseling⁸^,²⁴^,³⁶^,⁴⁰^,⁴¹^,⁵³
Psychosocial intervention by National York University: developed by psychotherapists, it has been consolidated since the end of the 1980s. It was initially developed with spousal caregivers^18,24,41,53. All versions have three components, except one⁴¹. The three components consist of individual and family counseling, participation in support groups, and ad hoc telephone counseling¹⁸^,²⁴^,³⁶^,⁵³. The differential component of the publication⁴¹ was family counseling with caregiver and family, in addition to donepezil administration for all patients.	Emotional support: reducing or impacting depression¹⁸^,²⁴^,³⁶^,⁴¹; reducing distress in relation to patients’ behavior¹⁸ due to the understanding developed³⁶; reducing caregivers’ suffering²⁴; and satisfaction with the support network⁵³. Informational support: learning techniques for coping with difficult situations was accessed as well as differentiating irritating problems from those that actually present risks¹⁸. Instrumental support: postponing patients’ hospitalization in long-term care facilities or nursing homes¹⁸^,³⁶.
Hybrid psychosocial intervention⁵⁹
Committed to Assisting with Recovery after Stroke⁵⁹: consists of improving caregivers’ perceived health, developing coping skills, promoting the use of social supports, preparing for care, and promoting reciprocity. It is carried out by a multidisciplinary team (nurses, occupational therapists, and physical therapists) with the first stage including information and magazines sent by mail and, later, home visits.	Emotional support: reduction of stress and depression, with a positive effect on self-perceived health. Informational support: continuous access to information brings benefits without many costs. Instrumental support: greater capacity to mobilize family support and also to acquire social support⁵⁹.
In-person²¹^,⁶¹
Family strengths-oriented therapeutic conversation²¹: developed by nurses, it aims at the cognitive development of affective and behavioral domains. It is a family assessment and intervention, using validation, investigation, assessment, therapeutic listening, therapeutic questions, provision of information and praise, seeking to improve the experience of care, problem-solving and identifying risks.	Emotional support: improving family, cognitive and emotional support²¹.
Intervention⁶¹: improves coping with emotional states and difficult circumstances, developing and applying basic skills and knowledge, through two stages: general group education; and a five-week program with topics of interest.	Emotional support: reduced tension, feelings of disappointment and less overall burden⁶¹.
Videoconference⁷²
Online video conferencing with education sessions on dementia, behavioral and psychological symptoms of dementia and caregiver stress, discussion and problem-solving of challenging situations encountered by caregivers, planning for the future and relaxation techniques, information on support services and legal information⁷².	Emotional support: reducing burden⁷².
Formal support: psychotherapeutic intervention
Psychotherapy⁶⁰
Psychotherapy: offered in a pre-established number of sessions per week. The scheduled topics were targeted according to each person’s needs⁶⁰.	Emotional support: reduction of anxiety, depression, subjective burden and also of psychological discomfort of caregivers⁶⁰.

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