Intellectual disability in children and teenagers: Influence on family and family health. Systematic review

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Enferm Clin. 2018;xxx(xx):xxx---xxx

www.elsevier.es/enfermeriaclinica

ORIGINAL ARTICLE

Intellectual disability in children and teenagers: Influence on family and family health. Systematic review夽 Joaquín Salvador Lima-Rodríguez, María Teresa Baena-Ariza, Isabel Domínguez-Sánchez∗ , Marta Lima-Serrano Departamento de Enfermería, Universidad de Sevilla, Sevilla, Spain Received 13 October 2016; accepted 1 October 2017

KEYWORDS Family health; Intellectual disability; Family; Nursing

Abstract Objective: To examine the influence of a child or adolescent with intellectual disabilities on the family unit. Method: A systematic review of the literature, following the recommendations of the PRISMA statement, was carried out on the PubMed, Scopus, CINAHL, PsycINFO and Psicodoc databases. Original articles were found, published in the last 5 years, in Spanish, English, Portuguese, Italian or French, with summary and full text and satisfactory or good methodological quality. Two independent researchers agreed on their decisions. Results: In general, care is provided in the family, mothers assume the greater responsibility, and their wellbeing is lower than that of fathers. Having the support of the husband improves their quality of life. The fraternal subsystem can be affected, with regard to the warmth and the status/power of the relationship, and behavioural problems. Family health may be affected in all its dimensions: family functioning and atmosphere due to increased demands and changes in the organisation and distribution of roles; family resilience and family coping, due to rising costs and dwindling resources; family integrity could be strengthened by strengthened family ties. Quality of family life is enhanced by emotional support.

DOI of original article: http://dx.doi.org/10.1016/j.enfcli.2017.10.005 Please cite this article as: Lima-Rodríguez JS, Baena-Ariza MT, Domínguez-Sánchez I, Lima-Serrano M. Discapacidad intelectual en ni˜ nos y adolescentes: influencia en la familia y la salud familiar. Revisión sistemática. Enferm Clin. 2018. https://doi.org/10.1016/ j.enfcli.2017.10.005 ∗ Corresponding author. E-mail address: [email protected] (I. Domínguez-Sánchez). 夽

2445-1479/© 2017 Elsevier Espa˜ na, S.L.U. All rights reserved.

ENFCLE-725; No. of Pages 14

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J.S. Lima-Rodríguez et al. Conclusions: These families may need individualised attention due to the increased demand for care, diminishing resources or other family health problems. Nurses using a family-centred care approach can identify these families and help them to normalise their situation by promoting their family health and the well-being of its members. © 2017 Elsevier Espa˜ na, S.L.U. All rights reserved.

PALABRAS CLAVE Salud familiar; Discapacidad intelectual; Familia; Enfermería

Discapacidad intelectual en ni˜ nos y adolescentes: influencia en la familia y la salud familiar. Revisión sistemática Resumen Objetivo: Analizar la influencia en la unidad familiar de la existencia de un hijo en edad infantil o adolescente, con discapacidad intelectual. Método: Revisión sistemática de la literatura, siguiendo las recomendaciones de la declaración PRISMA, en PubMed, Scopus, CINAHL, PsycINFO y Psicodoc. Se localizaron artículos originales, publicados en los últimos 5 a˜ nos, en espa˜ nol, inglés, portugués, italiano o francés, con resumen y texto completo y calidad metodológica satisfactoria o buena. Dos investigadores independientes consensuaron decisiones. Resultados: Generalmente el cuidado se presta en la familia, asumiendo las madres la mayor responsabilidad, presentando menor bienestar que los padres. El apoyo del cónyuge mejora su calidad de vida. El subsistema fraternal puede afectarse en la calidez de la relación, el estatus/poder y los problemas comportamentales. La salud familiar puede afectarse en todas sus dimensiones: clima y funcionamiento familiar por las mayores demandas y modificaciones en la organización y distribución de roles; resistencia y afrontamiento familiares por el aumento de gastos y disminución de recursos; la integridad familiar puede reforzarse al fortalecerse los lazos familiares. El apoyo emocional favorece la calidad de vida familiar. Conclusiones: Estas familias pueden necesitar atención diferenciada por su mayor demanda de cuidados, disminución de recursos o problemas de salud familiar. Las enfermeras, desde un enfoque de atención centrado en la familia, pueden identificarlas y ayudarlas a normalizar su situación, fomentando la salud familiar y el bienestar de sus miembros. © 2017 Elsevier Espa˜ na, S.L.U. Todos los derechos reservados.

What is known? Illness and disability are phenomena which can form part of family life, leading to structural, procedural and emotional changes. Care for children with intellectual disability mostly falls on their families. Depending on the degree of intellectual disability, the care demands for these children may be a huge burden for the family and significant changes occur to their quality of life, affecting the family system as a whole.

What does this article contribute? The disability of a child or teenager may alter the wellbeing and quality of family life of each of its members, as well as the family health which, depending on the family unit characteristics, may be affected in different dimensions, particularly with regard to family social

life, how the family functions, and the resistance and coping strategies of that family. An improvement in family integrity may be appreciated in those families who actively participate in caring for a disabled child. The importance of mutual helps groups for these families and the need for nurses to intervene stand out. They would be aimed at caring for the family unit, contributing to normalising the situation of these families and to improving their family health.

Introduction Illness or disability is generally unpredictable phenomena, which may become part of family life leading to structural, procedural and emotional changes. They may impose huge burdens on the family, affecting their different sub-systems and the family health, which is understood to be the family’s ability to function and to adapt to stressful life events, among which are the illness or disability of some of its members.1,2

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Intellectual disability and influence on family Intellectual disability (ID) is characterised by the presentation of significant limitations in intellectual functioning and adaptive behaviour, as shown by adaptive, conceptual and practical skills. This disability presents before 18 years of age.3 In Spain, the only official statistical data related to disability are those recorded in the Disability, Personal Autonomy and Situations of Dependency Survey, which shows that there are 138,700 people under 15 with disabilities, 65% of whom are boys and 35% girls. No data are recorded for those aged between 16 and 18. This survey does not offer specific data on ID, which impedes knowledge regarding its magnitude.4,5 However, in the study carried out by the Spanish Confederation of Associations in favour of people with Intellectual Disability, referring to data of 1999, it was estimated that there had been 79,684 under the age of 15 with ID, which would represent 35% of the intellectually disabled.6 This study, in 2014, confirmed that the rate of ID prevalence was 5.03/1000 inhabitants.7 The responsibility of care for children with ID is mostly accepted by their families.8 Depending on the severity of intellectual disability and the care demands for these children significant changes may occur to their quality of life of the family members and the overall family health.9 Family health is a dynamic procedure which allows the family members to evolve, using interaction, satisfaction of their needs, a solution to their problems and the ability to confront and adapt to situations of crisis when they present.10 Five dimensions may be distinguished in family health, including family social climate, family integrity, family functioning, family resistance and family coping strategies.11 Social climate refers to the internal ambiance the members of the family generate depending on their relationships, development and the stability of the system. Integrity refers to the degree of union, implication, participation and commitment of the members with the family unit. Family functioning is related to the family organisation for the development of family processes, maintaining a healthy and protective environment and satisfying the needs of its members. Family resistance or resilience enables the families to support the impact of the stressful living events, adapt to them and become stronger and finally, family coping strategies refers to the way in which the family confronts problems to resolve them and continue maintaining the health of the system.11 Few nursing studies are aimed at examining the repercussions of the ID on the family, which means it is necessary to increase the body of specific knowledge relating to this subject.12 For this reason, it is necessary to analyse the influence the existence of a small child or teenage son or daughter with ID may have on the family sub-systems (conjugal, parental and fraternal) and on the family health, so as to be able to respond to the following research question: does the presence of young or teenage children with ID have repercussions on the family sub-systems and on family health?

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Method A systematic review of the literature following the recommendations of the PRISMA declaration which establishes the items that a review should contain to be considered a high quality study.13,14 Theprocess was carried out by 2 independent researchers who made joint decisions. The search was undertaken in October 2015 from the PubM, Scopus, CINAHL, PsycINFO and Psicodoc data bases which contained the majority of studies related to this subject. The search strategies are recorded in Table 1. The selection of articles was executed in 2 phases: first from the title and the abstract and then from reading the complete text, establishing the following criteria of eligibility: original articles of quantitative or mixed methodology, related to objectives, published during the last 5 years, in Spanish, English, Portuguese, Italian or French, which include the abstract and complete text and with satisfactory or good methodology. The methodological quality was measured using the list of quality evaluation for observational studies (QATSO), which has 5 items and classifies studies in proportion to the percentage of their achievement (they are considered bad if they obtain under 33% of the items, satisfactory from 33% to 66% and good from 67% to 100%).15

Results 314 studies were located, excluding 301 which were not relevant to the objectives. The selection process is detailed in Fig. 1. Of the 13 included, 11 were quantitative, 6 transversal and 5 were cases and controls. The remainder were mixed. The majority were performed in USA, United Kingdom and Canada. 2012 was the year most articles were selected from (5). All other characteristics are contained in Table 2.

Analysis of bias and quality of evidence As observed in Fig. 1, 4 articles were excluded because they presented with bad methodology. Table 3 contains the methodological quality analysis and study limitations: the majority of bias is associated with participant selection and the use of surveys for data collection, possibly leading to information biases.

Summary of findings Families with children with ID may experience changes in the relationships and well-being of the different family sub-systems, generating less marital satisfaction, greater burden on the carer and affecting the functioning of the family as a whole with repercussions on the family’s quality of life, sense of coherence and family health dimensions.16---18 Table 4 contains the main findings of Statistical significance (p < .05). A summary is described below.

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J.S. Lima-Rodríguez et al. Table 1

Search strategies and records obtained.

Data base

Search terms, Boolean operators and cut off points used

Records obtained

PubMed

‘‘intellectual disability’’ AND (child* OR teen*) AND (‘‘family health’’ OR ‘‘family functioning’’) Filters: published in the last 5 years (‘‘intellectual* disability’’ OR ‘‘mental disability’’) AND (child* OR teen*) AND (‘‘family health’’ OR ‘‘family functioning’’) Limit to: Published 2010 to 2015 ‘‘intellectual disability’’ AND (child* OR teen*) AND (‘‘family health’’ OR ‘‘family functioning’’) Limits: Family; Intellectual disability; 2010---2015 ‘‘intellectual disability’’ AND (child* OR teen*) AND (‘‘family health’’ OR ‘‘family functioning’’) ‘‘intellectual disability’’ AND (child* OR teen*) AND (‘‘family health’’ OR ‘‘family functioning’’)

69

Scopus

CINAHL

PsycINFO Psicodoc Source: Own design.

Records obtained : Pubmed, Scopus, CINAHL, Psycinfo, Psicodoc (314)

Titles and abstracts: reasons for rejection -

German or Chinese language (3) Do not include abstract (0) Not linked to objectives (74) Duplicate articles (161)

Selected 76

Complete articles:reasons for rejection. -

Impossibility of recovering complete text (5)

-

It is not an original research article

-

Type of design 6) Has no direct relationship with the study objectives (32)

-

Low quality of the article (4)

Selected 13

Figure 1

Selection process of the articles found in the different data bases.

82

65

47 47

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Intellectual disability and influence on family Table 2

Main characteristics of the selected studies.

Article Ajuwon and Brown

Type of design, sample, study variables and tools 16

(2012)

Al-Krenawi et al.17 (2011)

Povee et al.18 (2012)

Norlin and Broberg19 (2013)

Cohen et al.20 (2014)

Chou et al.21 (2012)

Wieland and Baker22 (2010)

Cagran et al.23 (2011) Begum and Blacher24 (2011)

Mixed study on 80 carers of children with ID who receive governmental assistance for care. The quality of family life was studied using the FQOLS scale and its relationship with assistance received. The FQOLS contains 9 areas on quality of life: health, finances, family relationships, support from others, support for services, values, carers, free time and community, evaluated in 6 dimensions: satisfaction with the achievement, achievement in each area, initiative or efforts made by the family to achieve it, opportunities for achievement, stability of achievement over time and importance of each area for the family. It collects the responses to open questions on the questionnaire to analyse the influence of perceived assistance on quality of life. Case study and controls, on 300 Arabic Bedouin families with children with ID and a control group of 100 families with children without any developmental problems. Family functioning was studied using the McMaster Family Assessment Device, marital quality using the ENRICH Marital Satisfaction Scale, carer weariness using the Robinson’s Caregiver Strain Index and family coherence using the Sense of Coherence Scale Mixed study on 224 carers of children with Down syndrome. Dyadic conjugal adjustment was measured using the abbreviated Dyadic Adjustment Scale, family functioning using the Family Assessment Device, unadapted conduct using the adapted version of the Developmental Behaviour Checklist and behaviour of the autistic spectrum using the Social Communication Questionnaire. The impact of having a child with Down syndrome was described in the family activities, holidays and other aspects of life. a Case and control study. The group of cases with a sample of 58 mothers and 46 fathers of children with ID and the control group with a sample of 178 mothers and 141 fathers of children without ID. Well-being was studied using the Beck Depression Inventory, self-harming and stereotype behaviour using the Self-Injury/Stereotypic sub-scale, parental stress using the FIQ, financial risk, marital quality Dyadic Cohesion and Dyadic Satisfaction of the Dyadic Adjustment Scale and subscales and co-parental quality using the Parenting Alliance Measure Transversal study on 145 mothers of children with ID, married, or who live with their partner, differentiating a group of Latin women and another group of non Latin women. The instrumental support of the couple was studied and of other family members using the Kessler Perceived Social Support Scale, family attitude using the Steidel and Contreras (2003) Family Attitude Scale and quality of family life using the Beach Centre Family Quality of Life Scale, by Hoffman et al. (2006) Transversal study on 487 mothers of children with ID in a situation of employment and unemployment. The difficulties in reconciling work and care for these mothers, as well as family support was measured using the Family Support Scale; formal and informal, mother’s attitude in employment and her role as mother using the International Social Survey Programme and quality of the mother’s life using the Taiwanese version of the WHOQOL-BREF Case and control study. Its sample was 132 families of 48 children with ID and 84 children without ID. The intellectual capacity of the child was measured using the Standford-Binet Intelligence Scale-Fourth Edition, their adaptive behaviour using the Dyadic Adjustment Scale-7, conjugal concordance and support in bringing up the children using the Spousal Agreement and Support Scale, assessment by parents of the behavioural problems of the children through the CBCL, parent---child interaction with the Parent---Child Interaction Rating System, psychological symptoms generated through the Symptom Checklist 35-item and the perception of the parent son the impact of their child in the family using the FIQ Mixed study on 20 carers of families with children with ID. Quality of family life was measured using the FQOLS-2006 Case and control study on 70 dyads of siblings close in age, where the teenager of reference was a teenager aged12 with ID (n = 23) or without ID (n = 47). The cognitive skills of teenagers were studied using the Weschsler Intelligence Scale for Children-Fourth Edition, adaptive behaviour of the teenagers using the VABS, the relationship of siblings through the Sibling Relationship Questionnaire, social skills and behavioural problems (completed by the mothers) using the Social Skills Rating System-Secondary Level and behavioural problems of children though the Achenbach CBCL, completed by the mothers

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Article Emerson et al.

Type of design, sample, study variables and tools 25

(2010)

Samuel et al.26 (2012) McConkey et al.27 (2011)

Trute et al.28 (2010)

Rillotta et al.29 (2012)

Case and control study. The sample consisted of 370 families with a child with ID, a family with children with other types of disability and 7 families’ with children without any form of disability. The changes in the circumstances in the home and the poverty status were studied between 2 measurements taken 12 months apart and the poverty indicators: low income, privations, etc. Transversal study on 149 carers of children with ID. Quality of family life was studied using the FQOLS-2006 scale Transversal study (national survey) on 16,708 carers (siblings, parents, etc.) who lived with children with ID. The number of families who received relief services was studied, compared with the use of healthcare services and the correlations associated with the use of these services. Transversal study on 195 mothers of children with intellectual and developmental disability. Family adjustment was studied with the Brief Family Assessment Measure III, the consequences of care for a child with disability for the family using the Family Impact of Childhood Disability Scale and emotions provoked using the Positive and Negative Affect Schedule Mixed study on 42 carers of people with ID from South Australia. Quality of family life was measured using the FQOLS scale

CBCL: Child Behaviour Checklist; ID: intellectual disability; FIQ: Family Impact Questionnaire; FQOLS: Family Quality of Life Survey; VABS: Vineland Adaptive Behaviour Scales. Source: Own design.

Influence of a child or teenager with an intellectual disability on the relationships and well-being of the parental and conjugal sub-systems Comparing fathers and mothers of children with ID vs fathers and mothers of children with standard development (SD) we may observe that the former present with lower initial well-being and the parents suffer greater problems of behaviour, emotions and stress. In the long term, this difference affects the quality of the marital relationship.19 Different well-being predictors were observed in the mothers to the fathers. In the mothers they were: the child’s ID, high financial risk and the quality of the marital relationship. In the fathers they were: self harm/stereotyping the child, high financial risk and the quality of the marital relationship.19 The mothers with better family life quality (FLQ) were able to function better with their children.20 In the majority of cases the family takes care of the disabled child, with the mothers taking on greater responsibility and as a result tending to present with lower well-being than the fathers,16,19 since the need for continuous care may be an overburden for them.20,21 Another factor which affected the quality of their lives was the work-care balance. Those who had no difficulty with this presented with a better quality of life. The predictors of complications in balancing care and work for employed mothers were: health status, hours of care, formal and informal support, help from the father, and working hour flexibility. For those who were unemployed: the mother’s age, being a single mother, health status, family income, hours of care.21 With regard to the conjugal system, it was observed that the quality of the marital relationship was not associated with the presence of a disabled child in the home or with their behaviour (neither internalisation nor externalisation).22 However, it was associated with the

level of middle range income compared with low range income.18 Furthermore, as has been mentioned, the quality of the conjugal relationship predicts the well-being of fathers and mothers,19 where the support from the partner improves quality of life.17 This support is usually greater towards the mothers who share work and care and have higher salaries, than towards mothers with low salaries or who are exclusively dedicated to care and looking after the home.23 Influence on the relationships and functioning of the fraternal sub-system The relationship of siblings has been studied from the dimensions of warmth, conflict, and rivalry and status/relative power. The study by Begum and Blacher24 analysed the relationship of dyads of siblings to determine how this was affected by adaptation to the ID, problematic behaviour and social skills of the fraternal sub-system and its association with the type of dyad, gender and order of birth. The quality of the relationship between siblings was associated with gender: if the disabled teenager was a boy, the relationship between siblings was warmer than if it were a girl. It was also related to the type of dyad. Teenagers with SD presented with greater warmth between siblings of the opposite sex, whilst in teenagers with ID there was greater warmth between siblings of the same sex. Relative status/power was related to order of birth: in teenagers with ST, there were greater differences when the brother was younger and in teenagers with ID status/power relationships were similar, regardless of the order of birth.24 With regard to the problems of behaviour, conflictive relationships between siblings were a predictor of the total behavioural and internalising problems (withdrawal, somatic complaints and anxiety-depression) of the teenager

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Intellectual disability and influence on family Table 3

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Analysis of methodological quality and limitations of the studies included in the review.

Bibliographic reference

Quality

Limitations

75

Good

100 100

Good Good

Norlin and Broberg19 (2013)

75

Good

Cohen et al.20 (2014)

75

Good

Chou et al.21 (2012)

75

Good

100

Good

Cagran et al.23 (2011)

75

Good

Begum and Blacher24 (2011)

75

Good

Emerson et al.25 (2010)

100

Good

McConkey et al.27 (2011)

100

Good

Trute et al.28 (2010)

100

Good

Rillotta et al.29 (2012)

100

Good

The sample was made up of families who received services, which would be the minority ofthe Nigerian population Not reflected Use of open-ended questions in the self-administered survey The qualitative questions required the respondents to give their opinion on many points, and it was impossible to reflect the essential information on these families Low response rae and small sample size Awkwardness of several questions which could give rise to partial responses Limited measurement of behavioural problems of the children: self-harming/stereotyped behaviour Brief, closed interview because the parents were very busy and had difficulties. Use of a less intrusive study for the immigrant population to obtain better sample Mostly focused solely on mothers’ perception Non representative sample Use of a single item to measure the perception of mothers on work and care balance Parental behaviour observed for 30 minues during a home visit, not for long time periods. Small sample and non representative of families from the North East of Slovenia; only collected information on the quality of family life from the mothers and not the rest of the family Small sample size All the data are based on reports from the mothers The definition of children with disability does not cover all disabilities and it is difficult to identify all the children who really have a disability The data were obtained from a combination of national data, which do not include people who do not use these services. The precision of the recorded information cannot be confirmed. Generalises results of parents and other demographic subgroups It was not possible to include 2 variables: specific diagnostics and severe disability The sample represents families with members who have intellectual disability or development, leaving aside specific condtiions such as Down syndrome or autism.

Ajuwon and Brown

16

(2012)

Al-Krenawi et al.17 (2011) Povee et al.18 (2012)

Wieland and Baker22 (2010)

%

with ST vs the teenager with ID, where conflict was only significantly associated with problems of externalising behaviour (problems of concentration, thoughts, delinquent and aggressive behaviour).24 The status/intermediate power relationship (although marginally) predicted the existence of externalising behavioural problems in the teenagers with ID. This was combined with the association between the conflict and the behavioural problems leading to externalisation situations in teenagers with ID. This could be due to their limited social sphere, making the home a model of social behaviour, which would not occur with teenagers with SD, where conflict within the home is different from the conflict in other

contexts (for example, school) and is associated with internalising behavioural patterns.24 Influence on health and the quality of family life Different dimensions to family health may be altered by the presence of a child with ID in the family, and according to Al-Krenawi et al.,17 these families do not function so well and with less sense of coherence. The way in which the family functions is associated with the deviations in behaviour and the severity of the teenager’s disability.18 Emerson et al.25 observed that these families could experience a reduction in their family status and have a greater

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J.S. Lima-Rodríguez et al. Table 4

Main findings from selected articles.

Article Ajuwon and Brown

Findings and size of the effect 16

(2012)

Al-Krenawi et al.17 (2011)

Povee et al.18 (2012)

Norlin and Broberg19 (2013)

Cohen et al.20 (2014)

Chou et al.21 (2012)

The quality of family life areas in the different dimensions which scored the highest were: family relationships, influence of values and family health, and the lowest were carer/training for care, free time, support from others and from services Satisfaction and achievement are the main findings from the quality of life; they are related to the different explanatory dimensions: Satisfaction with: initiative (r = .47; p < .01), opportunities (r = .68; p < .01), stability (r = .54; p < .01) and achievements (r = .79; p < .01) Achievement with: initiative (r = .63; p < .01); opportunities (r = .83; p < .01) y stability (r = .47; p < .01) Initiative is also associated with: importance (r = .27; p < .05), opportunities (r = .55; p < .01) and stability (r = .27; p < .05) Opportunities are associated with: importance (r = .09; p < .05) and stability (r = .45; p < .01) Families with children with ID function worse (r = .13; p < .01), there is lower marital satisfaction (r = .50; p < .01), heavier burden on the carer (r = .58; p < .01) and less sense of coherence (r = .42; p < .01) Family functioning was predicted by the autistic spectrum behaviour (size of effect .12, p = .019), badly adapted behaviour (size of effect .03, p = .038), specifically the deviation in language (size of effect 0.17, p = .034), anxiety-relaxation behaviour (size of effect .34, p = .002) and antisocial behaviour (size of effect .24, p = .023); in simple analysis an association was also observed with the family income: the low ones obtained scores lower than the average (size of effect 2.03, p = .018) and the high ones (size of effect 2.17, p = .009). The quality of the marital relationship was only determined by medium vs low incomes (size of effect 2.45, p = .025) In mothers the predictors of well-being were: the ID of the child (ˇ = .24, p < .01), the high financial risk (ˇ = .12, p < .05) and the quality of the marital relationship (ˇ = .37, p < .001) In fathers the well-being predictors were: self-harm/stereotype of the child (ˇ = .26, p < .01), the high financial risk (ˇ = .16, p < .05) and the quality of the marital relationship (ˇ = .23, p < .01) The predictors of prospective well-being (per year) in the combined sample were: initial well-being (ˇ = .48, p < .001) and co-parental quality (ˇ = .20, p < .01) Furthermore, with regard to the parents of the control group, the parents of children with ID had lower initial well-being (d = .28, p < .05), higher experience of behavioural and emotional problems (d = .69, p < .01) and parental stress (d = .75, p < .01). Finally, it was observed that the mothers of children with ID presented with a lower initial well-being than the mothers of the control group (d = .05, p < .01), which did not occur with the fathers The mothers with the most emotional support presented with a better quality of family life. The beliefs about family support are related to quality of life. Income did not lead to significant changes in the same. The quality of family life is linked with the emotional support of the couple (r = .35; p < .001), the instrumental support of the couple (r = .22; p < .01), the instrumental support from other members (r = .23; p < .01) and family attitude (r = .29; p < .01) In the adjusted model the mothers whose quality of family life is better functioned better than their children (b = .27, d = .57; p < .01); and an interaction between a greater sense of familiarity and ethnicity (b = .25, d = .53; p < .01) (b = .46; p < .05), thus the sense of familiarity was more strongly related to the quality of family life in Latin mothers than in non Latin mothers. The predictors of the difficulty in balancing care and work were: Employed mother: health status (OR = .39, p < .001), hours of care (OR = 1.03, p < .001), formal support (OR = 1.20, p < .01), informal support (OR = .90, p < .05), help from the father (OR = .61, p < .05), employment flexibility (OR = .45, p < .001) Unemployed mother: mother’s age (OR = .95, p < .05), being a single mother (OR = .23, p < .05), health status (OR = .42, p < .01), family income (OR = .43, p < .01), hours of care (OR = 1.03, p < .001) Quality of life was higher in those women who confirmed they had no difficulty in balancing care and work, whether they were employed (d = 1.0, p < .001) or unemployed (d = .7, p < .001); in the mothers who indicated they had difficulty in balancing care and work quality of life was higher in those who were employed (d = .2, p < .001) Flexibility at work and support in care are important for the success of the balance between work and care. For unemployed mothers this was determined by individual characteristics (age, financial status, etc.)

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Intellectual disability and influence on family Table 4

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Article Wieland and Baker

Findings and size of the effect 22

(2010)

Cagran et al.23 (2011)

Begum and Blacher24 (2011)

Emerson et al.25 (2010)

No association was found between the marital quality and the presence of the disabled child in the home No associations were found between marital quality and the behaviour of the disabled child, either in externalisation or internalisation. Association with marital quality was only found with this behaviour when measured 2 years previously (ˇ = .80---.89, p < .001). However, in children without ID, marital quality was related to the child’s general behaviour (ˇ = .31, p < .001), externalisation (ˇ = 29, p < .001) and internalisation (ˇ = .34, p < .001), controlled by the behaviour in previous years. Significant differences were observed in all areas of quality of life, excepting the interaction with the community: (p < .000); finances (p < .000); family relationships (p < .000); social support (p = .009), support from services (p < .000); influence of values (p = .001); employment (p = .001); leisure (p < .000); interaction with the community (p = .191) Significant interaction between the state of disability and type of dyad, which reflected that the teenagers with typical development presented greater warmth in the relationships with siblings of the opposite sex (score Z = .27) vs siblings of the same sex (Z = −.35), whilst teenagers with ID had greater warmth in their relationships with siblings of the same sex (Z = .21) than the opposite sex (Z = −.44) (p < .05, R2 = .09) A significant interaction was observed between the disability and order of birth so that in standard development teenagers, there were greater relative differences of status/power when the sibling was younger (Z = .72) than when they were older (Z = −.43), whilst in teenagers with ID the status/power relationships were similar, regardless of whether the sibling was older or younger (Z = −.30 vs −.34), i.e. it was not affected by the order of birth (p < .05, R2 = .10) In standard development teenagers, behavioural problems were measured by the relationships between the siblings in mulivariate analysis (p < .05, R2 = .23), with conflict the only dimension that, controlled by the rest, showed a statistical association with their presence (ˇ = .34, p < .05). In teenagers with ID, the model was not statistically significant (p > .05, R2 = .23); a tendency was observed where conflict was the predictor of behavioural problems (ˇ = .46, p < .10) In standard development teenagers an association was found between the relationships between siblings and the presence of internalising behavioural problems (p < .05, R2 = .22), mainly measured by conflictive relationships (␤ = .33, p < .05) and rivalry (␤ = .27, p < .10), which did not happen in teenagers with ID In contrast, in teenagers with ID there was an association between the relationships between siblings and the presence of externalising behavioural problems (p < .05, R2 = .42), mainly measured by conflict (ˇ = .52, p < .05) and the status/power relationship (ˇ = .39, p < .10). The same did not occur in teenagers with standard develolpment, where conflict between siblings was only marginally associated with the presence of this type of problem (ˇ = .26, p < .10) or which did not occur in teenagers with disability Finally, no associations were found between the relationships of siblings and the social skills of the teenager in question, regardless of the presence or non presence of DI. The families of children or teenagers with ID have more probabilities of living in poverty (OR 1.87, CI 95% 1.47---2.38; p < .001) and adversity (OR 2.42, CI 95% 1.96---2.98; p < .001) Families with children with ID were considerably more likely to experience adversity than those families without previous adversity (OR 1.60, CI 95% 1.01---2.52; p < .05) Of the families which experience initially difficult situations, families with children with ID were significantly less likely to experience difficulties in the second year (OR .70, CI 95% .49---.98; p < .05) Three potential events associated with a marked increase of risk of a family with children or teenagers with ID were estimated to lead to poverty: increase in the number of dependent children in the home (OR 6.19, CI 95% 1.31---29.32), the main respondent is disabled (OR 3.30, CI 95% 1.08---10.15) and an increase in the number of adults in the home who work 16 h per week (OR 1.56, CI 95% 0.42---5.78)

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10 Table 4

J.S. Lima-Rodríguez et al. (Continued)

Article

Samuel et al.26 (2012)

McConkey et al.27 (2011)

Findings and size of the effect With regard to families without children with disability, families with children with ID who do not suffer from poverty were less likely to have an increase in the number of dependent children in the home (OR = 0.39, CI 95% 0.18---0.83, p = .01) and to have a decrease in occupational status (OR = .64, CI 95% .43---.96, p = .05) Three potential events were associated with a marked increase in the risk of a family with children with disability to suffer from adversity: separation (OR 3.92, CI 95% .67---22.89), an increase in the number of dependent children in the home (OR 3.75, CI 95% 0.65---21.80) and a decrease in the occupational family status (OR 1.77, CI 95% 0.59---5.27) Regarding families without disabled children, in the families with children with ID who did not suffer from adversity there was greater probability that the key respondent suffered from a lower health status. (OR 1.71, CI 95% 1.15---2.53, p = .01) Three potential events were associated with a marked increase in the risk of a family with children with disability to rise out of poverty: increase in occupational status (OR 5.40, CI 95% 1.10---26.44), the key respondent (almost always the mother) improved her health status (OR 4.26, CI 95% 1.93---11.95) and an increase in the number of adults in the home working more than 16 h per week (OR 2.13, CI 95% 0.37---12.22) Compared to families without disabled children, the families with children with ID in a situation of poverty had a greater probability of having a lower number of dependent children (OR 2.54, CI 95% 1.51---4.26, p = .001) Compared to families without disabled children, the families with children with ID in a situation of adversity were more likely to have a lower number of dependent children (OR 2.34, CI 95% 1.51---3.63, p = .001) Families with disabled members need more help from the social and health service system despite the considerable existing barriers to gain access to it. An association between satisfaction with the support services with regard to the following dimensions of the same was observed: opportunities (r = .35; p < .001), degree of success (r = .49; p < .001) and stability (r = .17; p = .04) No associations were found between the use of the services and race, the family structure or the family’s economical well-being. However, an association was found between the availability of the services in relation to race and the family financial well-being. The Caucasians therefore had a higherprobability than the Afro Americans of gaining access to therapy (d = .53, p < .01), defence (d = .42, p < .05), day programmes (d = .40, p < .05). The family financial well-being was positively associated with the perception of relief units (r = .26, p = .001), employment services (r = .25, p = .002), day programmes (r = .23, p = .004), mental health support (r = .21, p = .01), therapy (r = .18, p = .03), home support (r = .18, p = .03) and defence (r = .16, p = .04). An inverse relationship was found with the lack of awareness (r = −.08, p = .03). Regarding the perceived support dimension for services it was found that the Afro Americans tended to attribute greater importance to the formal support service than the Caucasians (r = .25, p = .004) A model of structural equations was applied to find out if the importance, opportunities, initiative, stability and degree of achievement had had any influence in satisfaction with the service; all the associations were statistically significant. Satisfaction was only directly influenced by the degree of achievement (ˇ = .41) measured by stability (ˇ = .31) and opportunities (ˇ = .33), which also had an influence on the degree of achievement (ˇ = .38). Initiative also had an influence on the degree of achievement (ˇ = .34). Initiative (ˇ = .14) and importance (ˇ = .03) had minor indirect effects on satisfaction. Importance only had a direct effect on initiative (ˇ = .23) and the opportunities had direct effects on the degree of achievement (ˇ = .38) and satisfaction (ˇ = .17) Those who received relief services (n = 4116) compared with those who did not receive them (n = 10,548): Belonged to a different area of reference (p < .05, OR variable depending on the area of reference) Presented with a moderate disability (OR 2.97, p < .001), severe/profound (OR 5.28, p < .001) or physical/sensory limitations (OR 1.29, p < .001)

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Intellectual disability and influence on family Table 4

11

(Continued)

Article

Trute et al.28 (2010)

Rillotta et al.29 (2012)

Findings and size of the effect Regarding minors, they had carers from 20 to 39 years of age (OR 2.52, p < .001), aged 40 or over (OR 2.15, p < .001) They were women (OR 1.17, p < .001) The contact professional was a social worker (OR 2.05, p < .001) or a community nurse (OR 1.41, p < .001) Regarding those who received relief services 20 or more days (n = 2125), those who received fewer days (n = 1959): Belonged to a different area of reference (p < .05, OR variable depending on the area of reference) Presented with a moderate disability (OR 1.60, p < .001), severe/profound (OR 3.07, p < .001) or also physical/sensory limitations (OR 1.28, p = .002) Were women (OR 1.19, p = .012) Comparing those with 2 parents as carers to those with carers who are other family members (OR 1.72, p < .001) The contact professional was a social worker (OR 1.17, p = .039), a community nurse (OR 1.44, p < .001) and not a medical service (OR .85, p < .052) Family adjustment was associated with the psychological strength of the mother to maintain a positive attitude in daily tasks and her skill in perceiving the positive consequences the disability had on her family An association was found between family adjustment and the family’s positive attitude towards the consequences of caring for a child with ID. (ˇ = .33, p > .001), and the ratio of the positive concept regarding positive/negative affection (ˇ = .43, p > .001) of the cognitive family assessment scale. Moreover, in simple analysis, family adjustment was associated with the age of the disabled child (r = .14, p < .05) The emotional support received by the families has higher repercussions on the quality of family life than any practical support. General satisfaction with the quality of family life and the mean combined satisfaction of all areas was strongly associated (r = .64, p = .000). General satisfaction was related to general achievement in all areas of quality of family life (r = .46, p = .005). The mean satisfaction score for all areas of quality of family life was significantly related to the mean of achievement scores (r = .58, p = .000)

ID: intellectual. Source: own design.

probability of experiencing poverty on seeing their financial resources diminished and their family income low. The increase in the risk of poverty was associated with a greater number of dependent children in the home, disability of the main respondent and the work load outside of the home. In contrast, factors which contribute to these families being raised out of their poverty are: increase in occupational status, improvement in the health status of the key respondent and the homecare burden18,25 aspects which are closely linked to family resilience. The families with disabled members require more help from the service offering system and suffer from barriers to gain access to them, due to the existence of long waiting lists, lack of information or social stigma associated with disability.16,26 These difficulties sometimes lessen their resistance and influence their health and family satisfaction. In the study by Samuel et al.,26 satisfaction with the support services in families with children with ID was associated with opportunities for using it or the level of success in doing so. The financial well-being of the family was related to the perception of access to relief services, employment services, day programmes, mental health support, therapy, support in the home and defence, whilst availability of

services (therapy, defence, day programmes) was associated with ethnicity (Caucasian compared with Afro-American).26 According to the study by McConkey et al.,27 the probability that a person with ID would receive a service was related to their place of residence, level of disability, whether they were an adult or of age or a woman, or cared for by people who were not their parents. Furthermore, the nurse and the social worker were the professionals in contact who most encouraged the use of this resource vs medicine. With regard to the family coping, those families with children with ID believe they are more exposed to suffering risks and adversities, such as separations, increasing the number of dependent children in the home and a drop in the family professional status. Family coping is associated with the age of the child, the psychological fortitude of the mother in keeping positive and the family’s positive ouytlook regarding the consequences of caring for the child.28 Finally, the quality of life in families with children with ID is quite a well studied aspect, as the most used tool in the Family Quality of Life Survey.16,26,29 However, studies do not compare the quality of life of families with children with ID to families with SD children, and it is not possible tos say whether the quality of life was higher or lower. According

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12 to Ajuwon and Brown,16 the dimensions of the quality of life most appreciated were: family relationships, the impact of values and health of the family, and the least appreciated were the carer/preparation for care, free time, and support from others and from services. The presence of emotional support promoted FLQ.20,29 We observed a strong association between FLQ, satisfaction and achievement in their different areas (health, finance, family relations, support from others and services, values, carers, free time and community) and moderate to strong associations with other dimensions such as the imitative, opportunities, stability in achievement and importance attached to these areas.14,20,28 Other aspects related to FLQ were beliefs regarding family support, family attitude or the feeling of familiarity.

Discussion The methodology used led to the achievement of the proposed objectives: to increase and update the body of nursing knowledge on selecting studies published within the last 5 years. This was appropriate, since in health sciences it is considered that after this period of time knowledge becomes obsolete.30 Fathers and mothers of children with ID initially present with lower well-being than children with SD, with these differences being cushioned in the long term if there is a good conjugal relationship as this is a preceptor of quality of life in both parents.19 The mothers accept greater dedication to the care of their children with ID, and suffer from lower well-being than the fathers due to the overburden of care, particularly working mothers with difficulties in the work/care balance.16,19---21 Previous studies insist in the lack of free time of fathers, and the concerns for the future of their children in 2 basic aspects: care of their children when they cannot do it and the loving and sexual relationships they may have.22,28,29,31 The nurse’s work is essential in preventing weariness of the carer’s role, using care support programmes. Equally, participation of the families in mutual help groups may help them to discover the family strategies which help them to dissipate their concerns regarding their children’s future.8 The aspects relating to the sexuality of the people with ID are often not taken on board by the families, and advisory programmes in this respect may be necessary.32 The impact of ID in the relationship between siblings is measured by other factors, such as gender or order of birth, whilst the presence of behavioural problems is associated differently in teenagers with SD and teenagers with intellectual disabilities. With regard to status/power relationships between SD siblings, the highest status corresponds to the oldest sibling, whilst when there is a sibling with ID they adopt the role of the younger sibling, regardless of the order of birth. Another difference found in the status/power relationship are the problems of externalising behaviour in disabled teenagers, which does not occur in the SD teenager.24 There are also studies which show the consequences of ID on siblings may be negative or positive.22,29,31,33 Among the former lower fraternal socialisation stands out, in those cases in which the ID impedes the development of activities

J.S. Lima-Rodríguez et al. which they could do if the child had SD. In these cases the type of play has to be adapted to encourage socialisation.33 Another negative aspect is lower atention and emotional support received from the parents, as their attention is more focused on the disabled sibling.18,29,33 These children are frequently aware of the overburden they are causing their parents and do not demand the help they need. This lack of attention may lead to the development of delinquency and behavioural problems.24 For this reason it is very importan that the parents identify these risks and dedicate quality time to these children alone, making them feel equally imporant.18,29 With regard to the positive aspects, previous authors emphasise that siblings usually raise their level of responsibility, and take on tasks relating to the care of the sibling with ID. These responsibilities develop from when they are very young, remain with them throuhout their life and are positively appreciated as valuable time spent with their sibling.18,33 Despite this, it is important for children to have free time and to be with their parents.24,33 Family health, understood to be the capacity the family has to satisfy the needs of its members, confront and resolve problems they face,10 may be impacted in all dimensions by the presence in the family of a teenager with ID. However, studies tend to take an individual approach, analysing how this affects mothers/fathers, partners, siblings or carers, without focusing on the consequences for the family as a unit and the health of the system, despite numerous authors underlining the need to conduct studies focused on the family unit and family health in identifying factors that may affect it.34,35 Studies record the importance of promoting support within the conjugal system for a good social family atmosphere, and good dyadic adjustment between the couple, since closeness between them would be a sign of its health and an improvement in the family climate.36 However, in the review it was observed that this does not usually occur in working women with low salaries or those who are exclusively dedicated to caring for the family and the home.23 In these cases social support should be increased to minimise the effects of overburden. Family integrity usually improves in these families when all members are involved in care, since integrity is helped by the participation of all members in resolving family problems, fulfilling obligations, defending the family and promoting solidarity of its member’s commitment to the family.10 These families may not function so well, depending on the behaviour of the teenager and the severity of their disability.17,18 Changes to the organisation and family roles may be necessary in this situation, with greater presence of the extended family. In families with a rigid structure, its functioning may suffer changes.37 To avoid this, the role of the nurse may be crucial in determining how the family may resolve their problems and take decisions, identify strengths and resources, areas of dissatisfaction and conflict, and family alliances, aid family debate or stressreducing strategies.38 Family resilience may be reduced as a result of lower financial status18,25 and the greater care requirements linked to the ID. Furthermore, they usually have greater difficulties in demanding and gaining access to the required assistance,

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Intellectual disability and influence on family due to inherent barriers to the social services or to the process of self-stigma linked to the disability.16,26 The selected studies do not address the consequences the social stigma towards the ID has on families and family health in any depth. When this becomes self stigma it may result in negation or concealment of the problem and become a barrier to searching for aid and resources. This may put the family resilience at risk or lead to the development of an ineffective confrontation which alters the family health and hinders the growth and development of the disabled member.16,39 This situation could improve with the help from social or professional services, or from members of the extended family, friends, neighbours and other parents in the same situation.29,31,39,40 The family’s ability to cope may be compromised in these families who are more exposed to suffering from adversities, such as separations, an increase in the number of dependent children in the home and a drop in the professional status of the familiy.25,28 To avoid this, they should be helped to adopt the means to normalise the family, improve the flexibility of its organisation and the performing of roles, with a modification of the family routine and the living conditions if necessary and adapting their resources, requesting the necessary assistance from the extended family and the social and health services available in their community.2,38 Nurses may teach the family stress-handling techniques, encourage them to participate in mutual support groups, promote a social network of carers, provide information on available healthcare, community and state resources, and identify relay care resources.41 The limitations of this study are: publication bias which affects those studies that were rejected by the journals and were not published; analysis bias, through an error in the analysis of the article selected which would in turn lead to a selection bias, since the author may include or exclude the study due to its results. The methodology used for systematic review is able to summarise the most evidence available regarding a certain topic. However, the limitation of the typology of the articles included, which are quantitative, means that valuable information which could come from other focal points and methodologies is lost. Moreover, the limitation to 5 data bases, although relevant to the proposed objectives, time period and the languages, may mean several articles are overlooked. Finally, the heterogeneity of the studies with regard to samples, designs and variables has hindered the comparison of the findings obtained. In future it would be pertinent to probe into the knowledge on the influence which the ID of a member has on family health and each of its dimensions in order to direct interventions aimed at promoting family health. It would also be pertinent to probe into the study of the consequences which social stigma towards intellectually disability has on the disabled person and their family system. To conclude, families with children or teenagers with ID may require different attention due to the higher demand for care, the overburden of the carer or the reduction in their resources. Furthermore, ID may constitute a source of stress which affects other members of the family unit and the performing of their roles, and may alter the family health in each of its dimensions. We thus recommend that nursing attention focus on the family, to identify these situations and help the families resolve them, using the different

13 nursing interventions to promote proper functioning of families of children with ID, thereby increasing family health and well-being of its members throughout the family life cycle.

Conflict of interests The authors have no conflict of interest to declare.

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