Abstract

The objective of this integrative revision is to understand the Brazilian scientific production of the thematic focus on the family quality of life (FQoL) of people with disabilities, as well as the participating population, referential theory, and instruments used in the studies. The data survey was done in the BVS, Scielo, and PubMed databases, and in the Capes’ Periodic portal, whose inclusion criteria were articles published from 2007 to 2018, available fully online, in Portuguese or English. These articles portrayed the theme of life quality of families of people with disabilities and articles from research done in Brazilian contexts. The results showed that only three of the 19 selected articles to the study analyzed the theme of FQoL directly including the aspects related to the construct. They also pointed out that WHOQOL-Bref was the most used instrument to evaluate the FQoL (n=11), followed by semi structured interviews (n=5) and that only 10,5%, i.e., two articles used the appropriated definition of the FQoL. The research determined that the thematic research is still in the beginning stage in the scientific national production, large use of individual constructs of life quality, and sparse presence of specific measures instruments to measure FQoL.

Key words:
Quality of life; family; People with disabilities

Introduction

Understanding the quality of life of families (FQoL) brings the challenge of thinking about the family beyond the individual demands of its members. It is the conception of the family as a unit that is the focus of attention and intervention; it is the art of replacing a vision limited to individual needs by understanding collective needs to provide tools that can help the whole family experience a positive sense of well-being.

FQoL has become an area of considerable international interest with advances in family-centered practices, being a natural extension of studies developed within the scope of the individual quality of life of people with disabilities¹1 Poston D, Turnbull A, Park J, Mannan H, Marquis J, Wang M. Family quality of life: A qualitative inquiry. Ment Retard 2003; 41(5):313-328..

The increasing interest and scientific investigations on FQoL in the early 2000s led researchers in the area to direct their attention to the development of FQoL measurement instruments. Initially qualitative, these studies were the first steps in defining the construct²2 Zuna NI, Turnbull A, Summers JA. Family quality of life: Moving from measurement to application. J Policy Pract Intellect Disabil 2009; 6(1):25-31..

FQoL conceptualization aroused interest in two lines of investigation: 1) The growing recognition of the capacity to adapt, and the strengths and positive points of families with a member with disabilities; and 2) The change in the understanding of disability from a view of limitations and deficits exclusive to the person with disabilities and their family to a view that considers the influences of contexts and environments, resources they offer, and support needed by families of people with disabilities in conducting the lives of all its members, including the disabled one³3 Chiu C, Kyza K, Zuna N, Turnbull A, Summers J A, Aya-Gomez V. Family quality of life. In: Wehmeyer ML, editor. The Oxford handbook of positive psychology and disability. Oxford: Oxford University Press; 2013; 365-392..

Zuna et al.⁴4 Zuna N I, Summers JA, Turnbull AP, Hu X, Xu S. Theorizing About Family Quality of Life. In: Kober R, editor. Enhancing the Quality of Life of People with Intellectual Disability: From theory to practice. Dordrecht: Springer; 2010. p. 241-278. (p. 262) defined FQoL after an extensive review of theoretical and empirical studies on the subject as a dynamic perception of family well-being, collectively and subjectively defined and informed by its members, in which individual and family needs interact.

This definition brings the combination of objective and subjective elements that work as a guideline for assessing the concept of FQoL, being a reference for the development of practices as it presents subjective components linked to the impressions and individual needs of family members without losing the focus on a family unit with characteristics that cannot be described by meeting only individual needs. It is a dynamic concept that changes over time according to the growth and development of the person with disabilities and their family²2 Zuna NI, Turnbull A, Summers JA. Family quality of life: Moving from measurement to application. J Policy Pract Intellect Disabil 2009; 6(1):25-31.^,55 Verdugo MA, Rodriguez A, Sainz F. Escala de calidad de vida familiar Manual de aplicación. Salamanca: Publicaciones del INICO; 2012..

Zuna et al.⁴4 Zuna N I, Summers JA, Turnbull AP, Hu X, Xu S. Theorizing About Family Quality of Life. In: Kober R, editor. Enhancing the Quality of Life of People with Intellectual Disability: From theory to practice. Dordrecht: Springer; 2010. p. 241-278. conducted a literature review on FQoL in disabilities, analyzing the findings and relating them to the components of a possible theory (definitions, concepts, variables, and relationships between variables) for the theme, the Unified Family Quality Life Theory (UFQoLT)²2 Zuna NI, Turnbull A, Summers JA. Family quality of life: Moving from measurement to application. J Policy Pract Intellect Disabil 2009; 6(1):25-31.^,44 Zuna N I, Summers JA, Turnbull AP, Hu X, Xu S. Theorizing About Family Quality of Life. In: Kober R, editor. Enhancing the Quality of Life of People with Intellectual Disability: From theory to practice. Dordrecht: Springer; 2010. p. 241-278.. This theory has related components that directly or indirectly influence FQoL, including (a) factors related to the family as a unit, (b) factors related to each family member, (c) factors related to the action, and (d) systemic elements.

In 2013, Caya Chiu et al.³3 Chiu C, Kyza K, Zuna N, Turnbull A, Summers J A, Aya-Gomez V. Family quality of life. In: Wehmeyer ML, editor. The Oxford handbook of positive psychology and disability. Oxford: Oxford University Press; 2013; 365-392. reviewed and updated the UFQoLT by expanding, redefining, and establishing new factors that influence FQoL. The authors incorporated elements such as factors referring to inputs and outcomes into the original theory, and rewrote the ones related to the action, naming them as family support and individual support level factors. The new proposal by Caya Chiu et al.³3 Chiu C, Kyza K, Zuna N, Turnbull A, Summers J A, Aya-Gomez V. Family quality of life. In: Wehmeyer ML, editor. The Oxford handbook of positive psychology and disability. Oxford: Oxford University Press; 2013; 365-392. defined the UFQoLT using six factors (Figure 1).

The graphic representation of the conceptual structure of the UFQoLT (Figure 1) is constituted by a network of overlapping circles in which system variables interact in a complex way with one another to produce satisfactory or unsatisfactory FQoL results.

Chart 1 briefly presents the definitions of the variables included in the revised and updated conceptual structure of the UFQoLT.

The emphasis of the model is the QoL of each member of the family and the family as a whole, bringing the philosophy of empowerment with the target point of achieving the active participation of the family, enabling it to recognize its needs by itself, identifying its priorities, and developing strategies to achieve its goals⁵5 Verdugo MA, Rodriguez A, Sainz F. Escala de calidad de vida familiar Manual de aplicación. Salamanca: Publicaciones del INICO; 2012..

FQoL is established when its members struggle and get what they want, feel satisfied with what they achieve, feel empowered to live the life they want, have their needs met, and enjoy life together planning and achieving goals that are meaningful to everyone⁶6 Brown I, Brown RI. Concepts for beginning study in family quality of life. In: Turnbull A, Brown I, Turnbull R, editores. Families and people with mental retardation and quality of life: International perspectives. Washington, DC: American Association on Mental Retardation; 2004. p. 25-49.^,77 Turnbull AP, Summers JA, Lee SH, Kyzar K. Conceptualization and measurement of family outcomes associated with families of individuals with intellectual disabilities. Ment Retardation Dev Disabil Res Rev 2007; 13(4):346-356..

Considering the above, the objective of this study is to know the national scientific production on the FQoL of people with disabilities published between 2007 and 2018, and also to describe who the study participants are, its theoretical framework, and the instruments used to measure FQoL, discussing them in the light of the UFQoLT.

Based on the aforementioned objectives, the hypothesis that guided this study was that investigations on the FQoL of people with disabilities in Brazil focus only on one of the family members, especially the member who plays the role of primary caregiver and is not in the family group as a unit.

This study considers a person with disabilities as a person with a long-term impediment of physical, mental, intellectual, or sensory nature, which, when interacting with one or more barriers, can obstruct their full and effective participation in society on equal terms with other people⁸8 Brasil. Lei nº 13.146, de 6 de julho de 2015. Dispõe sobre a Lei Brasileira de Inclusão da Pessoa com Deficiência [Internet]. 2015 [acessado 2019 jan 9]. Disponível em: http://www.planalto.gov.br/ccivil_03/_Ato2015-2018/2015/Lei/L13146.htm
http://www.planalto.gov.br/ccivil_03/_At... .

Methods

This study is an integrative literature review, i.e., a construction of a broad analysis of the literature, contributing to discussions about research methods and results, as well as about reflections for future studies⁹9 Mendes KDS, Silveira RCCP, Galvão CM. Revisão integrativa: método de pesquisa para a incorporação de evidências na saúde e na enfermagem. Texto Contexto 2008; 17(4):758-764..

The study considered the following steps: research question selection and hypothesis formulation; establishment of the inclusion and exclusion criteria; database selection; definition of keywords and search strategies; definition of the information to be extracted from the selected studies; study identification and selection; study categorization and evaluation; result interpretation; and presentation of knowledge review/synthesis⁹9 Mendes KDS, Silveira RCCP, Galvão CM. Revisão integrativa: método de pesquisa para a incorporação de evidências na saúde e na enfermagem. Texto Contexto 2008; 17(4):758-764..

The guiding question of this research was “How has the Brazilian scientific literature addressed the issue of FQoL of people with disabilities?”

The inclusion criteria were studies on the theme of FQoL (of any family member or caregiver) of people with disabilities; conducted in the Brazilian context; published from January 2007 to December 2018; available in full and online; published in Portuguese or English; and indexed in the BVS, Scielo, and PubMed databases and in the Capes Periodicals portal.

The exclusion criteria were the theme of QoL not focused on the family of people with disabilities, i.e., QoL studies aimed exclusively at the person with disabilities. Literature review articles and articles not performed in the Brazilian context were also excluded.

The search strategy included as main descriptors “Qualidade de Vida Familiar,” in Portuguese, and “Family Quality of Life,” in English. Searches were also conducted using the descriptors with a Boolean operator, including “Qualidade de Vida” and “Família” and “Deficiências,” in Portuguese, and “Quality of Life” and “Family” and “Disability,” in English.

All findings were compared to eliminate duplications. Then, titles and abstracts were read using the following criteria: a) title with at least one of the descriptors in Boolean operation or with the main descriptor; b) abstract with the inclusion criteria theme of FQoL of people with disabilities and study conducted in Brazilian contexts.

Finally, the selected articles were read in full. Review articles and those that did not address the proposed theme were excluded.

Results

A total of 4,758 articles were found from the descriptors, of which 4,730 were excluded after applying the search filters (year of publication, availability of the full article online, and language) and the inclusion and exclusion criteria, with 28 articles selected for full reading.

After the full reading, seven articles were excluded for not addressing the issue of FQoL of people with disabilities or for not being conducted in a Brazilian context, and two studies were excluded for not specifying the target population in the sample, thus leaving 19 articles for analysis and discussion.

Chart 2 shows the main data found in the articles included in the sample (authors, objective, study participants, method/instrument or technique used to assess FQoL, theoretical framework or theme of theoretical deepening/QoL definition used, and main results).

Analysis and discussion

Although there has been an increased interest in studies on the QoL of people with disabilities in the last decades, thereby arousing interest in the FQoL and increasing international scientific production on this topic, the results of the studies reviewed here (Chart 1) confirm the hypothesis that guided this literature review, since 17 of the 19 articles analyzed the QoL of primary caregivers or of one of the family members of people with disabilities (parents or siblings). In addition, data on the characteristics of the instruments and the theoretical framework used in the studies corroborated the guiding hypothesis of the present review.

The results presented in Table 1 show a predominance of studies with a quantitative approach (n = 13) and articles published in journals in the health area, with a predominance of journals in the area of public health, speech therapy, and nursing.

The year with the highest number of selected studies published was 2016 (n = 4). There was a uniform distribution of publications in 2008, 2010, 2011, 2014, and 2015, with one publication on the theme per year, and in 2009, 2012, 2013, 2017, and 2018, with two publications per year. No study published in 2007 was found.

Target subjects, theoretical framework, and instruments used in the studies

Of the 19 studies selected for analysis, eight included family members/caregivers of children/adolescents with disabilities¹¹11 Jorge BM, Levy CCAC, Granato L. Adaptação Cultural da Escala de Qualidade de Vida Familiar (Family Quality of Life Scale) para o Português Brasileiro. CoDAS; 27(6):534-540.^,1212 Nascimento GB, Schiling NO, Ubal SR, Biaggio EPV, Kessler TM. Classificação socioeconômica e qualidade de vida de familiares de crianças e adolescentes com deficiência auditiva. Rev CEFAC 2016; 18(3):657-666.^,1616 Oliveira MFS, Silva MBM, Frota MA, Pinto JMS, Frota LMCP, Sá FP. Qualidade de vida do cuidador de crianças com paralisia cerebral. Rev Bras Promoc Saude 2008; 21(4):275-280.

17 Oliveira MFS, Silva MBM, Frota MA, Pinto JMS, Frota LMCP, Sá FP. Qualidade de vida do cuidador de crianças com paralisia cerebral. Rev Bras Promoc Saude 2008; 21(4):275-280.^-1818 Fávero-Nunes MA, Santos MA. Depressão e qualidade de vida em mães de crianças com transtornos invasivos do desenvolvimento. Rev Latino-Am Enfermagem 2010; 18(1):33-40.^,2323 Oliveira EF, Limongi SCO. Qualidade de vida de pais/cuidadores de crianças e adolescentes com síndrome de Down. J Soc Bras Fonoaudiol 2011; 23(4):321-327.

24 Barbosa MRP, Fernandes FDM. Qualidade de vida dos cuidadores de crianças com transtorno do espectro autístico. Rev Soc Bras Fonoaudiol 2009; 14(4): 482-486.^-2525 Vieira CBM, Fernandes FDM. Qualidade de vida em irmãos de crianças incluídas no espectro do autismo. CoDAS 2013; 25(2): 120-127.; three included family caregivers of people with disabilities with a mixed profile (sample composed of caregivers of children/adolescents, adults, and older people)^13.26.27; six did not present information on the age of the subject of care (only the type of disability)¹⁰10 Costa TF, Gomes TM, Viana LRC, Martins KP, Costa KNFM. Acidente vascular encefálico: características do paciente e qualidade de vida de cuidadores. Rev Bras Enferm 2016; 69(5):933-939.^,1515 Braccialli LMP, Bagagi PDS, Sankako AN, Araújo RDCT. Qualidade de vida de cuidadores de pessoas com deficiência. Rev Bras Educ Espec 2012; 18(1):113-126.^,2020 Silva RS, Fedosse E. Perfil sociodemográfico e qualidade de vida de cuidadores de pessoas com deficiência intelectual. Cad Bras Ter Ocup 2018; 26(2):357-366.

21 Bittencourt ZZLC, Hoehne EL. Qualidade de vida de familiares de pessoas surdas atendidas em um centro de reabilitação. Cien Saude Colet 2009; 14(4):1235-1239.^-2222 Lima ML, Santos JLF, Sawada NO, Lima LAP. Qualidade de vida de indivíduos com acidente vascular encefálico e de seus cuidadores de um município do Triângulo Mineiro. Rev Bras Epidemiol 2014; 17(2):453-464.^,2828 Kantorski LP, Jardim VMR, Treichel CAS, Mola CL, Alves PF, Ferreira RZ, Oliveira MM. Fatores associados a uma pior avaliação da qualidade de vida entre familiares cuidadores de usuários de Centros de Atenção Psicossocial. Cad Saude Colet 2017; 25(4):460-467.; one study included family caregivers of older people¹⁹19 Reis LA, Santos KT, Reis L A, Gomes NP. Quality of life and associated factors for caregivers of functionally impaired elderly people. Braz J Phys Ther 2013; 17(2):146-151.; and one study included caregivers of adults with disabilities¹⁴14 Ponte AS, Fedosse E. Lesão Encefálica Adquirida: impacto na atividade laboral de sujeitos em idade produtiva e de seus familiares. Cien Saude Coletiva 2016; 21(10):3171-3182..

The analysis of the theoretical framework or theme of theoretical deepening used in the introductions and discussions showed that the most used themes, alone or in sets with other themes, were Clinical and sociodemographic data; impact of disabilities on family dynamics; and/or the family as a protector, provider of care and development (42.10%, n = 8)¹²12 Nascimento GB, Schiling NO, Ubal SR, Biaggio EPV, Kessler TM. Classificação socioeconômica e qualidade de vida de familiares de crianças e adolescentes com deficiência auditiva. Rev CEFAC 2016; 18(3):657-666.^,1414 Ponte AS, Fedosse E. Lesão Encefálica Adquirida: impacto na atividade laboral de sujeitos em idade produtiva e de seus familiares. Cien Saude Coletiva 2016; 21(10):3171-3182.^,1818 Fávero-Nunes MA, Santos MA. Depressão e qualidade de vida em mães de crianças com transtornos invasivos do desenvolvimento. Rev Latino-Am Enfermagem 2010; 18(1):33-40.^,2020 Silva RS, Fedosse E. Perfil sociodemográfico e qualidade de vida de cuidadores de pessoas com deficiência intelectual. Cad Bras Ter Ocup 2018; 26(2):357-366.

21 Bittencourt ZZLC, Hoehne EL. Qualidade de vida de familiares de pessoas surdas atendidas em um centro de reabilitação. Cien Saude Colet 2009; 14(4):1235-1239.^-2222 Lima ML, Santos JLF, Sawada NO, Lima LAP. Qualidade de vida de indivíduos com acidente vascular encefálico e de seus cuidadores de um município do Triângulo Mineiro. Rev Bras Epidemiol 2014; 17(2):453-464.^,2525 Vieira CBM, Fernandes FDM. Qualidade de vida em irmãos de crianças incluídas no espectro do autismo. CoDAS 2013; 25(2): 120-127.^,2626 Moreira RM, Oliveira BG, Cruz DP, Bomfim E S, Camargo CL, Sales ZN. Qualidade de vida de cuidadores familiares de pessoas com Síndrome de Down. Rev Pesqui Cuid Fundam 2016; 8(3):4826-4832.; caregiver health and burden (21.05%, n = 4)¹⁵15 Braccialli LMP, Bagagi PDS, Sankako AN, Araújo RDCT. Qualidade de vida de cuidadores de pessoas com deficiência. Rev Bras Educ Espec 2012; 18(1):113-126.^,1919 Reis LA, Santos KT, Reis L A, Gomes NP. Quality of life and associated factors for caregivers of functionally impaired elderly people. Braz J Phys Ther 2013; 17(2):146-151.^,2424 Barbosa MRP, Fernandes FDM. Qualidade de vida dos cuidadores de crianças com transtorno do espectro autístico. Rev Soc Bras Fonoaudiol 2009; 14(4): 482-486.^,2828 Kantorski LP, Jardim VMR, Treichel CAS, Mola CL, Alves PF, Ferreira RZ, Oliveira MM. Fatores associados a uma pior avaliação da qualidade de vida entre familiares cuidadores de usuários de Centros de Atenção Psicossocial. Cad Saude Colet 2017; 25(4):460-467.; and health-related QoL (21.05%, n = 4)¹⁰10 Costa TF, Gomes TM, Viana LRC, Martins KP, Costa KNFM. Acidente vascular encefálico: características do paciente e qualidade de vida de cuidadores. Rev Bras Enferm 2016; 69(5):933-939.^,1616 Oliveira MFS, Silva MBM, Frota MA, Pinto JMS, Frota LMCP, Sá FP. Qualidade de vida do cuidador de crianças com paralisia cerebral. Rev Bras Promoc Saude 2008; 21(4):275-280.^,1717 Oliveira MFS, Silva MBM, Frota MA, Pinto JMS, Frota LMCP, Sá FP. Qualidade de vida do cuidador de crianças com paralisia cerebral. Rev Bras Promoc Saude 2008; 21(4):275-280.^,2323 Oliveira EF, Limongi SCO. Qualidade de vida de pais/cuidadores de crianças e adolescentes com síndrome de Down. J Soc Bras Fonoaudiol 2011; 23(4):321-327.. Only three articles (15.79%) directly explored the theme of FQoL, including aspects related to the construct (support needs, emotional, physical and material well-being, family interaction, demographic, and economic data as positive or negative predictors of QoL, and support services and policies for the family and the person with disabilities, leisure, and community relations)^{11,13, 27}.

It was also noted that 68.4% (n = 13) of the studies used the World Health Organization (WHO) definition of QoL¹⁰10 Costa TF, Gomes TM, Viana LRC, Martins KP, Costa KNFM. Acidente vascular encefálico: características do paciente e qualidade de vida de cuidadores. Rev Bras Enferm 2016; 69(5):933-939.^,1212 Nascimento GB, Schiling NO, Ubal SR, Biaggio EPV, Kessler TM. Classificação socioeconômica e qualidade de vida de familiares de crianças e adolescentes com deficiência auditiva. Rev CEFAC 2016; 18(3):657-666.^,1414 Ponte AS, Fedosse E. Lesão Encefálica Adquirida: impacto na atividade laboral de sujeitos em idade produtiva e de seus familiares. Cien Saude Coletiva 2016; 21(10):3171-3182.

15 Braccialli LMP, Bagagi PDS, Sankako AN, Araújo RDCT. Qualidade de vida de cuidadores de pessoas com deficiência. Rev Bras Educ Espec 2012; 18(1):113-126.

16 Oliveira MFS, Silva MBM, Frota MA, Pinto JMS, Frota LMCP, Sá FP. Qualidade de vida do cuidador de crianças com paralisia cerebral. Rev Bras Promoc Saude 2008; 21(4):275-280.

17 Oliveira MFS, Silva MBM, Frota MA, Pinto JMS, Frota LMCP, Sá FP. Qualidade de vida do cuidador de crianças com paralisia cerebral. Rev Bras Promoc Saude 2008; 21(4):275-280.^-1818 Fávero-Nunes MA, Santos MA. Depressão e qualidade de vida em mães de crianças com transtornos invasivos do desenvolvimento. Rev Latino-Am Enfermagem 2010; 18(1):33-40.^,2121 Bittencourt ZZLC, Hoehne EL. Qualidade de vida de familiares de pessoas surdas atendidas em um centro de reabilitação. Cien Saude Colet 2009; 14(4):1235-1239.

22 Lima ML, Santos JLF, Sawada NO, Lima LAP. Qualidade de vida de indivíduos com acidente vascular encefálico e de seus cuidadores de um município do Triângulo Mineiro. Rev Bras Epidemiol 2014; 17(2):453-464.^-2323 Oliveira EF, Limongi SCO. Qualidade de vida de pais/cuidadores de crianças e adolescentes com síndrome de Down. J Soc Bras Fonoaudiol 2011; 23(4):321-327.^,2525 Vieira CBM, Fernandes FDM. Qualidade de vida em irmãos de crianças incluídas no espectro do autismo. CoDAS 2013; 25(2): 120-127.^,2626 Moreira RM, Oliveira BG, Cruz DP, Bomfim E S, Camargo CL, Sales ZN. Qualidade de vida de cuidadores familiares de pessoas com Síndrome de Down. Rev Pesqui Cuid Fundam 2016; 8(3):4826-4832.^,2828 Kantorski LP, Jardim VMR, Treichel CAS, Mola CL, Alves PF, Ferreira RZ, Oliveira MM. Fatores associados a uma pior avaliação da qualidade de vida entre familiares cuidadores de usuários de Centros de Atenção Psicossocial. Cad Saude Colet 2017; 25(4):460-467.; 21% of the articles (n = 4) presented no definition of QoL¹¹11 Jorge BM, Levy CCAC, Granato L. Adaptação Cultural da Escala de Qualidade de Vida Familiar (Family Quality of Life Scale) para o Português Brasileiro. CoDAS; 27(6):534-540.^,1919 Reis LA, Santos KT, Reis L A, Gomes NP. Quality of life and associated factors for caregivers of functionally impaired elderly people. Braz J Phys Ther 2013; 17(2):146-151.^,2424 Barbosa MRP, Fernandes FDM. Qualidade de vida dos cuidadores de crianças com transtorno do espectro autístico. Rev Soc Bras Fonoaudiol 2009; 14(4): 482-486.^,2727 Rodrigues SA, Fontanella BJB, Avó LRS, Germano CMR, Melo DG. A qualitative study about quality of life in Brazilian families with children who have severe or profound intellectual disability. J Appl Res Intellect Disabil 2018; 32:413-426.; and only 10.5% (n = 2) used the definition of FQoL^13.20.

The WHOQOL-Bref was the most used instrument to assess QoL (n = 11)¹²12 Nascimento GB, Schiling NO, Ubal SR, Biaggio EPV, Kessler TM. Classificação socioeconômica e qualidade de vida de familiares de crianças e adolescentes com deficiência auditiva. Rev CEFAC 2016; 18(3):657-666.^,1414 Ponte AS, Fedosse E. Lesão Encefálica Adquirida: impacto na atividade laboral de sujeitos em idade produtiva e de seus familiares. Cien Saude Coletiva 2016; 21(10):3171-3182.^,1515 Braccialli LMP, Bagagi PDS, Sankako AN, Araújo RDCT. Qualidade de vida de cuidadores de pessoas com deficiência. Rev Bras Educ Espec 2012; 18(1):113-126.^,1818 Fávero-Nunes MA, Santos MA. Depressão e qualidade de vida em mães de crianças com transtornos invasivos do desenvolvimento. Rev Latino-Am Enfermagem 2010; 18(1):33-40.^,1919 Reis LA, Santos KT, Reis L A, Gomes NP. Quality of life and associated factors for caregivers of functionally impaired elderly people. Braz J Phys Ther 2013; 17(2):146-151.^,2121 Bittencourt ZZLC, Hoehne EL. Qualidade de vida de familiares de pessoas surdas atendidas em um centro de reabilitação. Cien Saude Colet 2009; 14(4):1235-1239.

22 Lima ML, Santos JLF, Sawada NO, Lima LAP. Qualidade de vida de indivíduos com acidente vascular encefálico e de seus cuidadores de um município do Triângulo Mineiro. Rev Bras Epidemiol 2014; 17(2):453-464.

23 Oliveira EF, Limongi SCO. Qualidade de vida de pais/cuidadores de crianças e adolescentes com síndrome de Down. J Soc Bras Fonoaudiol 2011; 23(4):321-327.

24 Barbosa MRP, Fernandes FDM. Qualidade de vida dos cuidadores de crianças com transtorno do espectro autístico. Rev Soc Bras Fonoaudiol 2009; 14(4): 482-486.^-2525 Vieira CBM, Fernandes FDM. Qualidade de vida em irmãos de crianças incluídas no espectro do autismo. CoDAS 2013; 25(2): 120-127., followed by semi structured interviews (n = 5)¹³13 Tomaz RVV, Santos VA, Silva ALR, Germano C MR, Melo DG. Impacto da deficiência intelectual moderada na dinâmica e na qualidade de vida familiar: um estudo clínico-qualitativo. Cad Saude Publica 2017; 33(11):e00096016.^,1616 Oliveira MFS, Silva MBM, Frota MA, Pinto JMS, Frota LMCP, Sá FP. Qualidade de vida do cuidador de crianças com paralisia cerebral. Rev Bras Promoc Saude 2008; 21(4):275-280.^,1717 Oliveira MFS, Silva MBM, Frota MA, Pinto JMS, Frota LMCP, Sá FP. Qualidade de vida do cuidador de crianças com paralisia cerebral. Rev Bras Promoc Saude 2008; 21(4):275-280.^,2626 Moreira RM, Oliveira BG, Cruz DP, Bomfim E S, Camargo CL, Sales ZN. Qualidade de vida de cuidadores familiares de pessoas com Síndrome de Down. Rev Pesqui Cuid Fundam 2016; 8(3):4826-4832.^,2727 Rodrigues SA, Fontanella BJB, Avó LRS, Germano CMR, Melo DG. A qualitative study about quality of life in Brazilian families with children who have severe or profound intellectual disability. J Appl Res Intellect Disabil 2018; 32:413-426.. One article used the Short-form Health Survey (SF-36)¹⁰10 Costa TF, Gomes TM, Viana LRC, Martins KP, Costa KNFM. Acidente vascular encefálico: características do paciente e qualidade de vida de cuidadores. Rev Bras Enferm 2016; 69(5):933-939., one used a questionnaire prepared by the researchers themselves²⁸28 Kantorski LP, Jardim VMR, Treichel CAS, Mola CL, Alves PF, Ferreira RZ, Oliveira MM. Fatores associados a uma pior avaliação da qualidade de vida entre familiares cuidadores de usuários de Centros de Atenção Psicossocial. Cad Saude Colet 2017; 25(4):460-467., and one addressed the process of adaptation and validation of the FQOLS¹¹11 Jorge BM, Levy CCAC, Granato L. Adaptação Cultural da Escala de Qualidade de Vida Familiar (Family Quality of Life Scale) para o Português Brasileiro. CoDAS; 27(6):534-540..

Family quality of life or quality of life of family members?

The comparison between QoL studies from different countries³3 Chiu C, Kyza K, Zuna N, Turnbull A, Summers J A, Aya-Gomez V. Family quality of life. In: Wehmeyer ML, editor. The Oxford handbook of positive psychology and disability. Oxford: Oxford University Press; 2013; 365-392.^,2929 Hu X, Wang M, Fei X. Family quality of life of Chinese families of children with intellectual disabilities. J Intellect Disabil Res 2012; 56(1):30-44.^,3030 Mas JM, Baqués N, Balcells-Balcells A, Dalmau M, Giné C, Gràcia M, Vilaseca R. Family quality of life for families in early intervention in Spain. J Early Interv. 2016; 38(1): 59-74. that included theoretical references and specific FQoL measurement instruments and the studies found and selected in the present literature review shows discrepancies between the results obtained in the two scenarios, confirming the hypothesis formulated for the present study.

This comparison points to a distinction between what can be called studies on the FQoL (according to the UFQoLT) and studies on the QoL of family members of people with disabilities. The first identifies and works with variables that affect the well-being and QoL of the whole family (such as individual factors of each family member, factors at the level of family support, factors at the level of individual support, and systemic factors); and the second focuses on variables that interfere with the QoL of only one of the family members, usually the one directly affected by the impact caused by the presence of a person requiring special care (such as the impact of care, burden, and the presence of depression in the caregiver’s life and health, as shown in Chart 2).

Although there is a lack of dissociation between the QoL of each family member and the FQoL¹1 Poston D, Turnbull A, Park J, Mannan H, Marquis J, Wang M. Family quality of life: A qualitative inquiry. Ment Retard 2003; 41(5):313-328., because what affects one family member has an impact on all other members³¹31 McWilliam RA, editor. Routines-based early intervention - Supporting Young Children and Their Families. New York/ London; The Guilford Press; 2010., there is a contrast between what is meant by the QoL of a member of the family of people with disabilities, therefore individual QoL, and FQoL. Unlike individual QoL, which focuses on personal characteristics and environmental variables influencing the quality of life of only one member, FQoL considers the well-being of all family members in terms of what is necessary for everyone to have a good life together¹1 Poston D, Turnbull A, Park J, Mannan H, Marquis J, Wang M. Family quality of life: A qualitative inquiry. Ment Retard 2003; 41(5):313-328..

Based on elements such as QoL, theoretical framework (or theme of theoretical deepening), characteristics of the instruments, and QoL dimensions found in the selected studies, some characteristics that separate the two types of studies mentioned above can be defined.

The definition of QoL found in most selected articles define the first distinction between the two types of studies. The WHO definition of quality of life refers to QoL as an individual perception of his position in life in the context of the culture and value system in which he lives and in relation to his goals, expectations, standards, and concerns³²32 Fleck MPA, Louzada S, Xavier M, Chachamovich E, Vieira G, Santos L, Pinzon V. Aplicação da versão em português do instrumento abreviado de avaliação da qualidade de vida "WHOQOL-bref". Rev Saude Publica 2000; 34(2):178-183.. This definition contrasts with the concept of FQoL from a collective view, with emphasis on examining the perceptions and dynamics of the family unit as a whole⁴4 Zuna N I, Summers JA, Turnbull AP, Hu X, Xu S. Theorizing About Family Quality of Life. In: Kober R, editor. Enhancing the Quality of Life of People with Intellectual Disability: From theory to practice. Dordrecht: Springer; 2010. p. 241-278., a dynamic perception of family well-being, collectively and subjectively defined and informed by its members, in which individual and family needs interact²2 Zuna NI, Turnbull A, Summers JA. Family quality of life: Moving from measurement to application. J Policy Pract Intellect Disabil 2009; 6(1):25-31..

The characteristics of the instruments used in the selected articles and their own measurement instruments for FQoL are another difference between FQoL studies and study on the QoL of family members, as they have a direct influence on the type of results found in FQoL studies and in studies on the QoL of only one member of the family.

As previously mentioned, the standardized instruments and techniques used to assess QoL in the selected studies were the WHOQOL-Bref, the SF-36, the FQOLS, and interviews (semi structured or structured).

The WHOQOL-Bref contains 26 questions divided into four domains or dimensions (physical, psychological, social relations, and environment)³²32 Fleck MPA, Louzada S, Xavier M, Chachamovich E, Vieira G, Santos L, Pinzon V. Aplicação da versão em português do instrumento abreviado de avaliação da qualidade de vida "WHOQOL-bref". Rev Saude Publica 2000; 34(2):178-183., and the SF-36 has 36 questions divided into eight dimensions (functional capacity, physical aspects, pain, general health status, vitality, social aspects, emotional aspects, and mental health) and a question to comparatively assess the current health conditions and those of a year ago³³33 Ciconelli RM. Tradução para o português e validação do questionário genérico de avaliação de qualidade de vida Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) [tese]. São Paulo: Universidade Federal de São Paulo; 1997..

The WHOQOL-Bref and the SF-36 are measurement instruments that assess QoL based on the respondent’s individual perception, which, despite containing questions related to the environment and social relationships, focus on performance measurements or physical and psychological structures of the subject related to these contexts, allowing a self-assessment of objective and subjective aspects of QoL, but not allowing the expansion of responses to the family unit.

The results of the studies using these two tools to assess QoL showed that the health of the caregiver was affected in almost all domains assessed by the instrument, such as disabilities disorganizing the caregiver’s daily life; abdication from pleasurable activities, social isolation, and decreasing interpersonal relationships for almost exclusively dedicating to the task of care; the environment as a source of stress and conditions linked to the subject as a factor promoting or impeding a positive or negative perception of QoL. Some studies point to a positive QoL, although they indicate deficits in some areas evaluated by the instrument (usually psychological and environmental areas).

Theoretical frameworks or theoretical deepening themes focus on examining the relationship between QoL, health, and the burden of the care task from an individual perspective, directly or indirectly using a theoretical approach to QoL more focused on psychological aspects, which essentially seek indicators that deal with individual subjective reactions to experiences, thus depending, firstly, on the direct experience of the person whose QoL is being assessed and indicates how people perceive their own lives, happiness, and satisfaction³⁴34 Pereira EF, Teixeira CS, Santos A. Qualidade de vida: abordagens, conceitos e avaliação. Rev Bras Educ Fis Esporte 2012; 26(2):241-250., but that poorly explores family unit and environmental variables that directly interfere with the unsatisfactory perception of QoL, in the identification of the support needs of the caregiver, and in the existing support that could effectively include other family members in the care task, relieving stress, improving health conditions, and decreasing the burden of the study’s target caregiver.

In contrast, as previously mentioned, investigations on FQoL analyze QoL collectively (family group). In this sense, different authors focused their research on the conceptualization, measurement, and applicability of the UFQoLT. These studies try to identify the support needs expressed by the families; understand the satisfaction of families regarding the support received from formal and informal sources; understand how disability severity and type and demographic and economic data are positive or negative predictors of QoL, or how spiritual beliefs and positive family interaction promote a feeling of emotional well-being¹1 Poston D, Turnbull A, Park J, Mannan H, Marquis J, Wang M. Family quality of life: A qualitative inquiry. Ment Retard 2003; 41(5):313-328.^,33 Chiu C, Kyza K, Zuna N, Turnbull A, Summers J A, Aya-Gomez V. Family quality of life. In: Wehmeyer ML, editor. The Oxford handbook of positive psychology and disability. Oxford: Oxford University Press; 2013; 365-392.^,2929 Hu X, Wang M, Fei X. Family quality of life of Chinese families of children with intellectual disabilities. J Intellect Disabil Res 2012; 56(1):30-44.^,3030 Mas JM, Baqués N, Balcells-Balcells A, Dalmau M, Giné C, Gràcia M, Vilaseca R. Family quality of life for families in early intervention in Spain. J Early Interv. 2016; 38(1): 59-74., and other determinants.

In the context of the present literature review, only three studies included the dimensions present in the concept of FQoL, discussing their findings as variables that affect the whole family, including the study by Tomaz et al.¹³13 Tomaz RVV, Santos VA, Silva ALR, Germano C MR, Melo DG. Impacto da deficiência intelectual moderada na dinâmica e na qualidade de vida familiar: um estudo clínico-qualitativo. Cad Saude Publica 2017; 33(11):e00096016., who assessed the QoL of 15 families of people with moderate intellectual disabilities through semi structured interviews and classified their findings into categories based on the nine QoL dimensions identified by the Quality of Life Research Unit group. The results showed an imbalance between mothers and fathers in the attention and care given to the child with disabilities; interference in the quality of the marital relationship; intense symbiosis between mother and child with disabilities and interference in the relationship with other children; difficulties in obtaining information and in accessing health and education services, added to the perception of unsatisfactory quality of care provided and of these services as a great source of family stress; family impoverishment and financial difficulties as a result of mothers leaving the labor market, and difficulties in coordinating the agendas and interests of different family members as family leisure complicators.

The study by Rodrigues et al.²⁷27 Rodrigues SA, Fontanella BJB, Avó LRS, Germano CMR, Melo DG. A qualitative study about quality of life in Brazilian families with children who have severe or profound intellectual disability. J Appl Res Intellect Disabil 2018; 32:413-426. evaluated the QoL of 15 families of people with severe intellectual disabilities using semi structured interviews and classifying their findings in categories based on the Family Quality of Life Survey 2006 (FQOLS-2006). The results of the study showed dissatisfaction with public health services and with the professionals working there; dissatisfaction with the quantity and quality of care; difficulties in obtaining information and access to health services; decreased leisure and recreation activities; and impaired interaction with the community.

Finally, the study by Jorge et al.¹¹ used a quantitative instrument based on the Beach Center FQOLS validation process for use in Brazil. The results show low satisfaction levels in areas such as emotional well-being, support to people with disabilities, physical and material well-being, and the relationship between parents and children. It also shows a high satisfaction level in the family interaction domain.

The results of the studies by Tomaz et al.¹³13 Tomaz RVV, Santos VA, Silva ALR, Germano C MR, Melo DG. Impacto da deficiência intelectual moderada na dinâmica e na qualidade de vida familiar: um estudo clínico-qualitativo. Cad Saude Publica 2017; 33(11):e00096016. and Rodrigues et al.²⁷27 Rodrigues SA, Fontanella BJB, Avó LRS, Germano CMR, Melo DG. A qualitative study about quality of life in Brazilian families with children who have severe or profound intellectual disability. J Appl Res Intellect Disabil 2018; 32:413-426. showed that a semi structured interview is an excellent tool to assess FQoL in contexts with little availability or absence of quantitative instruments suitable for this purpose, as in the case of Brazil. The technique also has the advantage of exploring the desired theme in depth in studies involving small groups of subjects.

The first studies on FQoL assessment studies were qualitative, through discussion groups and semi structured interviews²2 Zuna NI, Turnbull A, Summers JA. Family quality of life: Moving from measurement to application. J Policy Pract Intellect Disabil 2009; 6(1):25-31.. These studies were extremely important for the progression of the theme, as they allowed the construction of concepts and quantitative measures. Three instruments were developed from these studies³⁵35 Giné C, Momplet RV, García MG, Rueda CS, Montalá MD, Beltran FS, Balcells AB, Hernández MTP, Pinatella DS, Alcocer ALA, Valdés AGY, Del Gredorio VC, Mas JM. Las escalas de calidad de vida familiar (cdvf-e): apoyo y orientación para la intervención. Siglo Cero: Revista Española sobre Discapacidad Intelectual; 44(247):21-36., including a) the International Family Quality of Life Survey-2006 - FQoL-S-2006, which assesses QoL in nine dimensions (economic well-being, family relationships, support from other people, support from services that provide care to people with disabilities, cultural and spiritual beliefs, educational level and preparation for studies, leisure and free time, and community involvement). It has already been translated and adapted into 12 languages, currently being used in 18 countries; b) The Beach Center FQOLS, which assesses FQoL in five dimensions (family interaction, parenting, emotional well-being, physical and material well-being, and support related to disabilities) and has already been adapted for use in countries such as China, Taiwan, Spain, Colombia, Brazil, and Puerto Rico; c) The Latin American Scale of Quality of Life, which has 42 items distributed into six dimensions (emotional well-being, personal strength and growth, living standards, physical and material well-being, family life, and social and community relations) and aims at being an adequate scale for the sociocultural and economic Latin American context.

All of these scales corroborate the UFQoLT, as they are centered on the family and seek to identify variables that positively or negatively influence the QoL of the whole family unit.

It is worth mentioning that the UFQoLT²2 Zuna NI, Turnbull A, Summers JA. Family quality of life: Moving from measurement to application. J Policy Pract Intellect Disabil 2009; 6(1):25-31.

3 Chiu C, Kyza K, Zuna N, Turnbull A, Summers J A, Aya-Gomez V. Family quality of life. In: Wehmeyer ML, editor. The Oxford handbook of positive psychology and disability. Oxford: Oxford University Press; 2013; 365-392.^-44 Zuna N I, Summers JA, Turnbull AP, Hu X, Xu S. Theorizing About Family Quality of Life. In: Kober R, editor. Enhancing the Quality of Life of People with Intellectual Disability: From theory to practice. Dordrecht: Springer; 2010. p. 241-278. has been the compass of several investigations on FQoL in different cultural contexts, and despite being a new theory, it has been well accepted by researchers who have investigated the dimensions of FQoL in each of the theory units (family characteristics, characteristics of each family member, and the support and influence of systemic factors in the FQoL)³⁰30 Mas JM, Baqués N, Balcells-Balcells A, Dalmau M, Giné C, Gràcia M, Vilaseca R. Family quality of life for families in early intervention in Spain. J Early Interv. 2016; 38(1): 59-74..

Therefore, the dissemination of the UFQoLT and its implementation as a reference could improve the access to research instruments already developed for this purpose, the development of instruments suitable for the Brazilian context, and the consolidation of Brazilian scientific production in the international trend of current studies on the QoL of families of people with disabilities.

Final considerations

FQoL is an increasingly growing theme that has become stronger in international research guidelines on people with disabilities and their families in recent decades. Contrary to this reality, the results of this literature review show a national scientific production focused on the individual understanding of QoL regarding families of people with disabilities.

The results found here also indicate an incipient national production on the theme, with few studies, with the expressive use of individual QoL constructs, and with the scarce use of measurement instruments that help understand FQoL.

The few studies found analyze FQoL and show the need for formal and informal support for families with disabled members, which constitute barriers to achieving family well-being.

References

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