Family quality of life: an integrative review on the family of people with disabilities

Nunes, Ana Célia; Luiz, Erika Aquino Marques; Barba, Patrícia Carla de Souza Della

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FREE THEMES • Ciênc. Saúde Colet. 26 (7) • July 2021 • https://doi.org/10.1590/1413-81232021267.06962019 copy

Family quality of life: an integrative review on the family of people with disabilities

Authorship SCIMAGO INSTITUTIONS RANKINGS

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

Family Quality of Life Components
Variables	Definition
Family unit factors	They refer to the forms in which a family can be described as a unit. It considers aspects inherent to family interactions and the ongoing relationships between its members.
Individual factors of each family member	They include the demographic data, characteristics, and individual beliefs of each individual within a family. They consider basic characteristics such as age, sex and ethnicity, disability type and severity, educational level of parents, and employment status of family members in working age.
Family Support Level and Individual Support Level Factors	These include the formal (professional rehabilitation and special education services, for example) and informal support (extended family, friends, neighbors, etc.) received by the families of people with disabilities.
Systemic factors	They represent the macro environment in which people with disabilities and their families live. They refer to the constitutional and ethical principles that govern a society at the federal, state, and local levels in the areas of education, social protection, and health care.
Outcome-related factors	These are the outcomes of the interaction between factors related to each member of the family and/or related to the family unit individually, or factors related to individual and/or family unit support.
Input-related factors	These include new strengths, priorities, and needs of the family that reenter the system in a feedback loop.

Authors	Objective	Study participants	Method/instrument or technique used to assess FQoL	Theoretical framework or theme of theoretical deepening/QoL definition used	Main results
Costa et al. (2016)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.	To investigate the association between QoL domains related to the health of family caregivers and the sociodemographic characteristics of individuals with stroke sequelae.	136 caregivers.	Quantitative/Short-Form-36 instrument (SF-36).	Health-related QoL/QoL according to the WHO	QoL related to the health of family caregivers was compromised in almost all domains assessed. QoL differences linked to sociodemographic aspects of people with stroke sequelae (age, marital status, and education).
Jorge et al. (2015)¹¹11 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.	To adapt the Family Quality of Life Scale (FQOLS) culturally for the Brazilian Portuguese (BP) version to evaluate instrument reliability of the QoL of families that have children with hearing impairment.	41 Parents.	Quantitative/FQOLS.	FQoL aspects without specifying a theory/none	The FQOLS proved to be an easy to administer instrument with satisfactory reliability. The assessed families indicated satisfactory FQoL. The instrument helps health professionals understand the dynamics, weaknesses, and singularities of each family better.
Nascimento et al. (2016)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.	To investigate the relationship between socioeconomic classification and the perception of QoL of people who have a family member with hearing impairment.	20 family members.	Quantitative/WHOQOL-Bref.	Family as a promoter of child development (ecological influences on child development)/QoL according to the WHO	Directly proportional relationship between socioeconomic classification and the FQoL perceptions in all domains assessed in the survey, except for the environmental domain.
Tomaz et al. (2017)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.	To investigate the impact of moderate intellectual disability on family dynamics and QoL.	15 mothers.	Qualitative/Semistructured interview.	Systemic model and FQoL (not mentioning a theory)/FQoL according to the UFQoLT	Care for the disabled child centered on the mother; interference in the quality of the marital relationship; greater burden of responsibility in maintaining family harmony for the mother; intense symbiosis between mother and child with disabilities and interference in the relationship with other children; schools, the main community institution for children and adolescents, were considered inadequate, with a negative impact on FQoL; difficulties in obtaining information and accessing health and education services and the perception that the quality of care provided is unsatisfactory represent a major source of family stress; family impoverishment and financial difficulties as a result of mothers leaving the labor market; and difficulties in coordinating the schedules of different family members were aspects identified as family leisure complicators.
Ponte; Fedosse (2016)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.	To correlate the impact of an ABI on the work of people in working age with their QoL, as well as that of their family members.	48 people with ABI and 27 family members.	Qualitative- quantitative/WHOQOL-Bref.	Clinical and demographic data and the impact of ABI on the subjects’ lives/QoL according to the WHO	The sudden onset of an ABI causes disabling sequels, disorganizing the subjects and their family, affecting their QoL in all aspects.
Braccialli et al (2012)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.	To analyze and compare the QoL of caregivers working with people with special needs in a rehabilitation institution.	90 Caregivers.	Quantitative/WHOQOL-Bref.	Caregiver health and overload/QoL according to the WHO	QoL was classified as good, and the environmental domain received the lowest score.
Oliveira et al. (2008)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.	To understand the quality of life of caregivers working with children with cerebral palsy.	8 Mothers.	Qualitative/Semistructured interview.	Health-related QoL/QoL according to the WHO	Difficulties in transportation, financial resources, health, social life (leisure), life projects and coping (religiosity); the caregivers’ QoL was considered unsatisfactory.
Moretti et al, (2012)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.	To evaluate the quality of life of caregivers of children with cerebral palsy treated at the Association of Parents and Friends of Disabled People (Associação dos Pais e Amigos dos Excepcionais - APAE) in Rio Branco, AC, South Western Amazon, Brazil.	12 Caregivers.	Qualitative/Semistructured interview.	Health-related QoL; Caregiver health and burden/QoL according to the WHO	The QoL of caregivers was considered unsatisfactory, especially regarding the psychological domain and independence level.
Favero-Nunes; Santos, (2010)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.	To assess the prevalence of dysphoria/depression symptoms in mothers of children with autistic disorder and to identify possible relationships with QoL and sociodemographic characteristics.	20 Mothers.	Quantitative/WHOQOL-Bref.	Clinical and sociodemographic data of people with PDD; maternal mental health; health-related QoL/QoL according to the WHO	Most participants positively assessed their QoL; mothers with a higher level of education were less vulnerable to the criteria for dysphoria/depression and had higher scores in the psychological, environmental, and physical QoL domains.
Reis et al. (2013)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.	To assess the QoL and associated factors of caregivers working with older people with functional disabilities to help plan and implement multidisciplinary measures to improve the caregivers’ QoL.	40 Caregivers.	Quantitative/WHOQOL-Bref.	Caregiver health and burden/None	QoL is affected more in the physical and environmental domains and is less impaired in the psychological domain; high prevalence of health problems in caregivers and QoL affected by the work burden.
Silva; Fedosse, 2018.²⁰20 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.	To define the sociodemographic profile and QoL of caregivers working with people with intellectual disabilities in a small city in RS, Brazil.	75 caregivers; 71 family members, and four formal caregivers.	Quantitative/WHOQOL-Bref.	Family as a protector/caregiver health burden/FQoL according to the UFQoLT	The higher mean scores were in the social domain, followed by the physical, psychological, and environmental domains, with few differences between men and women. They experience difficult situations and economic, physical and/or emotional changes. Abdication of leisure activities to dedicate to work; social isolation, decreased interpersonal relationships with focus on household and religious environments.
Bittencourt; Hoehne, (2009)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.	To evaluate the QoL of parents of deaf people in a health Rehabilitation service.	15 family members of deaf people.	Quantitative/WHOQOL-Bref.	Impact of deafness/ QoL in health and QoL according to the WHO	A total of 80.0% of the interviewed parents reported having “good” or “very good” QoL; 80.0% of respondents reported being “satisfied” or “very satisfied” with their health; and lower perception of QoL in the environmental and psychological domains.
Lima et al. (2014)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.	To describe and compare the QoL of stroke patients and their caregivers.	210 participants, divided into four groups: stroke with caregivers (44); stroke without caregivers (39); caregivers (44); and control group (83).	Quantitative/WHOQOL-Bref.	Sociodemographic Stroke/QoL data according to the WHO	In all domains, the mean scores for the group of stroke patients with caregivers and stroke patients without caregivers were lower than the mean scores of the group of caregivers, which had a mean score lower than that of the control group; the physical domain was the most affected for the group of stroke patients with caregivers and the least affected for the group of caregivers and the control group.
Oliveira; Limongi, (2011)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.	To evaluate the QoL of parents/caregivers of children and adolescents with Down Syndrome (DS) and the influence of sociodemographic aspects on the results obtained.	31 parents/caregivers.	Quantitative/WHOQOL-Bref.	Health-related quality of life; family dynamics in DS. QoL according to the WHO	Most parents/caregivers rated their QoL as “good”; the environmental domain was the most affected; statistically significant positive correlations were found between the environmental domain and the sociodemographic variables socioeconomic and education levels.
Barbosa; Fernandes (2009)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.	To evaluate the QoL of caregivers of children with autistic spectrum disorders (ASD) and determine if there is a relationship between the different domains and demographic aspects of the parents’ education and social class.	150 caregivers.	Quantitative/WHOQOL-Bref.	ASD caregiver health and burden/None	The statistical analysis showed that the aspects included in the physical, psychological, and social relations domains of WHOQOL-Bref, and sociodemographic issues were decisive in the characterization of the subjects’ QoL; factors related to the environmental domain, such as difficulties in accessing health services, increased the stress level of caregivers of ASD children and adolescents.
Vieira; Fernandes (2013)²⁵25 Vieira CBM, Fernandes FDM. Qualidade de vida em irmãos de crianças incluídas no espectro do autismo. CoDAS 2013; 25(2): 120-127.	To evaluate the self-reported QoL of older siblings of autistic children using the WHOQOL-Bref.	21 older siblings.	Quantitative/WHOQOL-Bref.	Dynamics and difficulties of families of children with ASD/QoL according to the WHO	The most affected domain was the environment; both the caregivers of autistic children and their siblings notice QoL difficulties, mainly related to access to health and transportation services, housing conditions, security, leisure, financial resources, and opportunities to acquire information and skills; the siblings who answered the questionnaire reported no significantly impaired QoL.
Moreira et al. (2016)26	To analyze the QoL perception of parents/caregivers of people with DS.	10 caregivers.	Qualitative/semi structured interview.	Clinical and sociodemographic data of DS/QoL according to the WHO	60% of respondents participate in regular leisure activities, but the desire for more leisure moments is present, being at the same time a limiting factor for the QoL of parents/caregivers; evidencing that the absence of health problems interferes with QoL, which is influenced by the availability of health services; FQoL is seen by parents/caregivers as a need to be closer to their children.
Rodrigues et al., 2018²⁷27 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.	To analyze the impact of severe or profound intellectual disabilities in FQoL dimensions in a sample of Brazilian families to identify a series of aspects that could be modified.	15 mothers	Qualitative/semi structured interview.	FQoL/Sociodemographic data of the Brazilian population/does not present a concept of QoL but uses the Family Quality of Life Survey 2006 (FQOLS-2006) as a base and reference for FQoL.	Impact of aspects related to health management issues in FQoL, how the Unified Health System and its professionals are perceived as inadequate/mothers’ perceptions that their children have less access to health services than they think necessary/difficulties in obtaining information and access to health services, as well as the perception that the quality of care was poor/decreased leisure and recreation activities owing to the lack of public services and adequate transport/impaired interaction with the community owing to the mothers’ view on the social stigma related to disabled child.
Kantorski et al., 2017²⁸28 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.	To identify the prevalence of and factors associated with a poor FQoL assessment of psychosocial care center (CAP) users in the southern region of Brazil.	1,242 family members of CAP users	Quantitative/Questionnaire prepared by the researchers.	Caregiver health and burden, and data on variables that influence QoL/QoL according to the WHO.	The factors associated with a poor assessment of QoL found in the research were education, easy access to CAPS, CAP effectiveness, CAP support to burden professionals, distribution of care activities, health problem, relationship with family, and feeling of burden.

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[1] Collaborations

AC Nunes contributed to the conception, design methodological, search, analysis and interpretation data, and writing the article. EAM Luiz contributed to the conception, design methodology, search and writing of the article. PCSD Barba contributed to the conception, design methodology, writing of the article and approval of the final version to be published.