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Background: Vitiligo places a significant psycho-social burden on caregivers and family members. Aims: The aim of the study was to develop and preliminarily validate a scale to measure the psychosocial impact of vitiligo on adult family members. Methods: Themes that emerged from qualitative interviews and a focus group discussion with family members were used to generate items for a preliminary scale, followed by pre-testing and scale development. The new scale was then tested with two comparator scales and a global question. Results: A preliminary scale with 32 items was pilot tested on 30 participants. Following this, the scale was condensed to 16 items in 12 domains that were administered to 159 participants. Scale scores ranged from 0 to 48 with a mean of 19.75 ± 12.41. The scale had excellent internal consistency with Cronbach’s alpha coefficient of 0.92 (0.70–0.95) and also showed good test-retest reliability at two weeks (r = 0.946). The scale showed criterion, convergent and known group validity. Limitations: It was conducted in a large teaching hospital which may have resulted in selection of patients with persistent or progressive disease and more worried family members. Vitiligo is highly stigmatized in our country and the performance of the scale may need to be evaluated in other communities and cultures as well where stigma is less oppressive. Conclusion: Family Vitiligo Impact Scale appears to be an easy-to-complete, reliable and valid instrument to measure the psychosocial impact of vitiligo in family members of patients. It may be useful as an outcome measure in both clinical and research settin
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RESUMO Objetivo Investigar a qualidade de vida familiar (QVF) entre famílias brasileiras que têm filhos com deficiência intelectual (DI) moderada. Métodos Estudo transversal, realizado com 50 famílias com filhos com DI moderada de São Carlos, São Paulo, Brasil. Os dados foram coletados por meio de formulários, com informações sociodemográficas, os índices de funcionalidade de Barthel e de Lawton & Brody e a Escala de Qualidade de Vida Familiar do Beach Center. Resultados Os domínios mais fortemente correlacionados com a QVF total foram "interação familiar" (r = 0,870; p < 0,001) e "cuidado dos pais com os filhos" (r = 0,845; p < 0,001). Não houve diferenças na distribuição da QVF em relação às variáveis sociodemográficas investigadas. Observou-se correlação moderada (r = 0,326) e significativa (p = 0,021) entre o índice de funcionalidade de Lawton & Brody e a QVF. O modelo de regressão linear ajustado explicou 10,6% da variabilidade encontrada na QVF (p = 0,021) e mostrou que o aumento de uma unidade no valor do índice de Lawton & Brody representou aumento de 0,092 na QVF. Conclusão A QVF das famílias investigadas encontra-se aquém de outras amostras internacionais. Ações clínicas que fortaleçam o diálogo e a coesão familiar e a construção de um plano terapêutico individualizado podem ser meios efetivos de ajuda a essas famílias.
ABSTRACT Objective To investigate the family quality of life (FQoL) among Brazilian families who have children with moderate intellectual disability (ID). Methods A cross-sectional study was carried out with 50 families who have children with moderate DI from São Carlos, São Paulo, Brazil. Data were collected by questionnaires including sociodemographic information, Barthel and Lawton & Brody functional indexes, and the Beach Center Family Quality of Life Scale. Results The domains "family interaction" (r = 0.870; p < 0.001) and "parenting" (r = 0.845; p < 0.001) were more strongly correlated with the total FQoL. There were no differences in the distribution of FQoL according to the sociodemographic variables investigated. A moderate (r = 0.326) and significant (p = 0.021) correlation was observed between the Lawton and Brody functional index and the FQoL. The adjusted linear regression model explained 10.6% of the variability found in the FQoL (p = 0.021) and showed that the increase of one point in the Lawton and Brody index represented an increase of 0.092 in the FQoL. Conclusion The FQoL of the families investigated is below other international samples. Clinical actions that strengthen dialogue and family cohesion, and the construction of an individualized therapeutic plan can be effective ways to help these families.
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Resumen Este trabajo pretendió determinar el estado de la Calidad de Vida Familiar de niños y adolescentes con discapacidad asociada a anomalías congénitas, asistentes a la consulta de genética clínica de un centro de referencia del suroccidente colombiano. Se empleó el modelo de Calidad de Vida Familiar propuesto por la Universidad de Kansas, y la Escala de Calidad de Vida Familiar (ECVF) adaptada para Colombia. El instrumento evaluó los Indicadores y Factores de la escala. Cada factor fue evaluado en términos de importancia y satisfacción asignados por el cuidador. Se configuró el Mapa de Calidad de vida Familiar (MCVF), que señaló dos áreas (de necesidades y fortalezas). La información fue almacenada y procesada con el programa Excel. El MCVF mostró que gran parte de los indicadores se ubicaron en el área fuerte del mapa, a excepción de algunos relacionados con los Recursos familiares y Apoyo a la persona con discapacidad (PCD), que se ubicaron en el área de necesidades. Por medio de estrategias de diseño, se generó una forma gráfica para sintetizar los resultados y presentarlos de forma clara a las familias.
Abstract This study sought to determine the status of family quality of life in children and teenagers with disability associated to birth defects, who attended the clinical genetics outpatient consultation at a reference center in southwestern Colombia. The Family Quality of Life models proposed by the University of Kansas, and The Family Quality of Life Scale (FQOL) adapted for Colombia, were used to evaluate indicators and scale factors. Each factor was rated in terms of importance and satisfaction according to the caretaker. The Map Family Quality of Life (MFQOL) was configured and shows two areas (needs and strength). The information was saved and processed with the Excel software. The MFQOL showed that most of the indicators were located the strong area of the map, with the exception of some related with family resources and support of persons with disabilities (PWD), which were located in the needs area. Through design strategies it was generated a graphic form to summarize the results and present them clearly to families.
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Quality of Life , Congenital Abnormalities/diagnosisABSTRACT
Resumo A qualidade de vida familiar (QdVF) em famílias de pessoas com deficiência intelectual (DI) tem interessado investigadores, sugerindo potencialidades em termos de avaliação e intervenção. O presente artigo realizou uma revisão sistemática dos estudos empíricos que analisam a QdVF em famílias de pessoas com DI. Efetuou-se uma pesquisa bibliográfica num portal de bases de dados e recorreu-se a critérios de inclusão previamente definidos. Do total de 32 estudos selecionados, 15 recorreram ao instrumento FQOLS-2006, focando-se na análise das dimensões e domínios da mesma; 11 ao Beach Center FQOL Survey, relacionando o constructo com diversas variáveis; e seis a outras formas de avaliação, essencialmente qualitativas. Assim, a QdVF mostra-se pertinente para compreender e intervir com famílias de pessoas com DI.
Abstract Family quality of life (FQoL) for families with members who have an intellectual disability (ID) has recently captured the interest of researchers and demonstrated potential for evaluation and intervention. This paper intends to revise systematically empirical studies that analyze FQoL in families with members having ID. A bibliographic search was carried out in a database and previously defined inclusion criteria were used. From a total of 32 studies, 15 used the FQOLS-2006 that focused on the analysis of their dimensions and domains, 11 the Beach Center FQOL Survey that related the construct to other individual and family variables and six other methods to evaluate FQoL. Thus, FQoL is relevant to understand and intervene with families of persons with ID.
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Resumen Entre los aspectos que contribuyen a la calidad de vida familiar están los diferentes apoyos a las familias. Este estudio tiene como objetivo identificar el tipo de apoyos que consideran relevantes las familias de niños con discapacidad usuarios de servicios de fisioterapia en atención temprana y en qué manera la administración pública influencia la calidad de esos apoyos. Se trata de un estudio cualitativo fundamentado en un paradigma crítico social. Los participantes han sido 16 madres y 4 padres que han sido entrevistados, y sus aportaciones se analizaron con análisis de discurso. Entre las aportaciones se destaca la importancia de los apoyos familiares y de las redes de padres de niños con discapacidad. También se destaca el papel de los apoyos profesionales y por lo tanto cómo los recortes en servicios públicos de tipo sanitario y social han agudizado una inequidad en salud en relación a las familias que pueden o no disponer de servicios adicionales. Se sugieren otros enfoques en los servicios que pueden apoyar a las familias.
Abstract Different types of supports to families are among the aspects that contribute to family quality of life. This study aims to identify the types of supports that families of children with disabilities, users of early intervention services, consider relevant and how public administration influences the quality of this support. This is a qualitative study based on a critical social paradigm. Sixteen mothers and four fathers were interviewed and their contributions were analyzed using discourse analysis. The importance of family support and networks of parents of children with disabilities were highlighted. The role of the supports by health professionals is also crucial and, therefore, cuts in public health and social services have exacerbated the inequity in health. In practice this is highlighted in relation to those who can and the ones who cannot afford additional services. Other approaches in the support to families are suggested.
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Humans , Male , Female , Child , Quality of Life , Social Support , Family , Disabled ChildrenABSTRACT
Objective To explore the family quality of life and family support status of children with disabilities, as well as the relation-ship between them in China. Methods A total of 3198 families with children with disabilities were surveyed with Chinese Version of Family Quality of Life Scale and Family Support Scale. Results The satisfaction of family quality of life was (3.48±0.75), in the middle level. The support degree was (1.68 ± 0.57), in the low level. The family quality of life highly correlated with professional support (r=0.67, P<0.001), and also correlated with support from relatives, social organizations, friends and spouse (r=0.36~0.55, P<0.01). Conclusion China is lacking of family-centered support services to children with disabilities, that can significantly predict family quality of life. It is needed to organize the family-to-family help organizations and social welfare services, improve the social finance allowance, with the overarching purpose to improve the family quality of life for families with children with disabilities in China.
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BACKGROUND: The alarming increase in prevalence of dialysis-requiring kidney disease is a major health concern in the country. With more patients undergoing dialysis, more families are also exposed to the stresses of caregiving. The aim of this study was to investigate the impact of dialysis-requiring kidney disease on the quality of life of the patient's family. Information on the magnitude and areas of impact is essential in developing strategies to support the family.METHODS: Data were obtained from pre-tested, structured, close ended questionnaires completed by 60 family members of kidney disease patients on dialysis at Holy Child Hospital from October 16 to November 30, 2015. Analysis was carried out using the GNU PSPP software.RESULTS: Most family members were female (77%), the spouse of the patient (34%) or the child (30%), and living with the patient (70%). Eighty-nine percent were directly involved in patient care; 55% held the role of the main caregiver. Ten key themes were investigated and the areas of negative impact by magnitude are: Emotional Impact (100%) citing worry, stress, and frustration; Financial Impact (100%) citing medical bills as the most burdensome; Family Relationships (82%) citing increased stress and tension; Sleep & Health (64%) citing sleep loss from having to wake to assist the patient; Daily Activities (63%) seeing caregiving as a burden; Social Life (58%) citing guilt feeling as a hindrance to socialization; Time Planning (57%) with the unpredictability of the patient's symptoms being the main cause of not being able to make plans; Holidays (48%) blaming appointments for not being able to go on vacation; Work & Study (43%) citing lack of focus; and Support & Medical Care (42%) citing lack of support from other family members. Positive effects were also identified with 90% reporting strengthened personal relationship with the family, 83% having more awareness of their diet, 80% having strengthened faith, and 77% noting a closer family as a result. Relationships between these themes were discussed.CONCLUSION: As revealed, dialysis-requiring kidney disease has several negative impacts on the quality of life of involved families. If left neglected, the family, instead of being a resource in patient care, may become a barrier. Strategies to employ the positive effects as enablers in managing the areas of negative impact must be developed to provide appropriate support for the patient and the family unit.
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Humans , Male , Female , Middle Aged , Young Adult , Kidney , Dialysis , Caregivers , Emotions , Family , Family Relations , Frustration , Guilt , Kidney Diseases , Patient Care , Prevalence , Quality of Life , Renal Dialysis , Socialization , Spouses , Surveys and QuestionnairesABSTRACT
Se pretendió evaluar la calidad de vida en familias de niños y adolescentes con discapacidad en la ciudad de Cali, Colombia, a través de la Escala de Calidad de Vida Familiar [ECVF] adaptada a población colombiana. La muestra fue de 385 familias. Se realizó un análisis descriptivo de la información sociodemográfica de la muestra, de los Indicadores y Factores de la ECVF y un análisis inferencial para comprobar la relación entre la satisfacción con la calidad de vida familiar con variables como tipo de discapacidad, edad, género, tipo de familia, estatus socioeconómico y relación de quien respondió la escala con el miembro de la familia con discapacidad. Se encontró que el factor en que las familias manifestaban mayor insatisfacción era el de Apoyo a la persona con discapacidad y los indicadores apoyo para conseguir beneficios del Gobierno y apoyo de entidades locales para el miembro de la familia con discapacidad. No se encontraron diferencias entre las familias en relación con las variables de estudio.
We intended to assess quality of life in families of children and adolescentswith a disability in the Cali city (Colombia) through the Family Quality of Life Survey [FQLS] adapted for Colombian population, with 385 participating families. A descriptive analysis the socio-demographic information of the sample and the FQLS indicators and factors was done, as well as an inferential analysis for hypothesis checking on the relation between familyquality of life with variables as disability type, age, gender, family type,socio-economic status and relation with the person with disability in the family. Families seemed to be more dissatisfied in the Support for persons with disabilities factor and the indicators support to get the governmentbenefits and support to get services of the locals institutions for the familymember with a disability. No differences were found among families in thevariables of study.