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Quality of Life: A Survey of Parents of Children/Adults with an Intellectual Disability Who Are Availing of Respite Care

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Title: Quality of Life: A Survey of Parents of Children/Adults with an Intellectual Disability Who Are Availing of Respite Care
Language: English
Authors: Caples, Maria, Sweeney, John
Source: British Journal of Learning Disabilities. Mar 2011 39(1):64-72.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
Peer Reviewed: Y
Page Count: 9
Publication Date: 2011
Document Type: Journal Articles
Reports - Research
Descriptors: Health Services, Mental Retardation, Quality of Life, Parents, Foreign Countries, Databases, Respite Care, Surveys, Caregiver Role, Caregivers, Children, Adults, Parent Caregiver Relationship, Disabilities, Inclusion
Geographic Terms: Ireland
DOI: 10.1111/j.1468-3156.2010.00619.x
ISSN: 1354-4187
Abstract: Two-thirds of the people registered on the Irish National Intellectual Disability Database (NIDD) reside at home with family members frequently supporting them (Kelly et al., "National Intellectual Disability Database Committee Annual Report 2006," Health Research, 2007). Use of respite care services by parents with a child/adult with an intellectual disability (ID) in Ireland is growing in the context of social policy initiatives for greater social inclusion of people with disabilities. Irish parents who care for their child/adult with an ID at home are not asking for the care of their child/adult to be taken away from them, but to assist them in this role and to help them to meet the demands of personal, family, social and work life, they need to be supported with reliable, flexible and responsive services (Redmond & Richardson, "J Appl Res Intellect Disabil," 2003; 16: 205-218). Parents often have to negotiate complex barriers to access support services such as respite, health or social care (Sloper, "Child Care Health Dev," 1999; 25: 85-99). Chadwick et al., ("Child Adolesc Ment Health" 2002; 7: 66-72) suggest that respite care was primarily regarded as a service that was provided to relieve parental burdens. This article draws on a recent study that investigated the quality of life of parents of children/adults who have an intellectual disability and who are availing of respite care. The findings suggest that parents are experiencing "good" to "excellent" quality of life and that demand exceeds supply. More work needs to be carried out to establish what services are deemed most valuable to parents and to show how their needs can be met to the best of the Health Service Providers ability.
Abstractor: As Provided
Entry Date: 2011
Accession Number: EJ927847
Database: ERIC
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  Value: <anid>AN0058058556;f0401mar.11;2019Jun04.10:58;v2.2.500</anid> <title id="AN0058058556-1">Quality of life: a survey of parents of children/adults with an intellectual disability who are availing of respite care. </title> <p>Accessible summary: This article describes the findings of a small‐scale survey investigating the quality of life of parents of children and adults with an intellectual disability who are availing respite care with a response rate of 38% (n = 49). The findings of the study which was conducted in 2008 on parents' experience of respite care in an Irish setting indicated that: • Demand exceeds supply and many parents face a lengthy wait gaining access to respite care• Respite care was not necessarily associated with parental desire for an improvement in quality of life• The majority of parents reported that their quality of life was either 'good' or 'excellent'• Further studies need to be conducted to establish what services are deemed most valuable to parents Summary: Two‐thirds of the people registered on the Irish National Intellectual Disability Database (NIDD) reside at home with family members frequently supporting them (Kelly et al., National Intellectual Disability Database Committee Annual Report 2006, Health Research, 2007). Use of respite care services by parents with a child/adult with an intellectual disability (ID) in Ireland is growing in the context of social policy initiatives for greater social inclusion of people with disabilities. Irish parents who care for their child/adult with an ID at home are not asking for the care of their child/adult to be taken away from them, but to assist them in this role and to help them to meet the demands of personal, family, social and work life, they need to be supported with reliable, flexible and responsive services (Redmond & Richardson, J Appl Res Intellect Disabil, 2003; 16: 205–218). Parents often have to negotiate complex barriers to access support services such as respite, health or social care (Sloper, Child Care Health Dev, 1999; 25: 85–99). Chadwick et al, (Child Adolesc Ment Health 2002; 7: 66–72) suggest that respite care was primarily regarded as a service that was provided to relieve parental burdens. This article draws on a recent study that investigated the quality of life of parents of children/adults who have an intellectual disability and who are availing of respite care. The findings suggest that parents are experiencing 'good' to 'excellent' quality of life and that demand exceeds supply. More work needs to be carried out to establish what services are deemed most valuable to parents and to show how their needs can be met to the best of the Health Service Providers ability.</p> <p>Keywords: parents; quality of life; respite care; Intellectual disability</p> <p>In Ireland, in 2007, there were 25 613 people registered on The National Intellectual Disability Database. These numbers reflect an intellectual disability prevalence rate of 6.04 per 1000 of the population. Of this number, 16 366 are living at home with their parents, relatives or foster parents; 2049 of these people residing at home have indicated a need for residential support services such as respite care ([<reflink idref="bib30" id="ref1">30</reflink>]). Whilst there have been concerns about the level of coverage of data used by Health Research Board in compiling its annual databases, the authors acknowledge that the current databases are not entirely comprehensive but represent the best available data ([<reflink idref="bib22" id="ref2">22</reflink>]).</p> <p>During the last forty years, people with an intellectual disability have returned to their communities from institutions and in many countries those born today remain with their families who have a different social outlook when compared with past generations ([<reflink idref="bib8" id="ref3">8</reflink>]). In Ireland, the informal promotion of equality and social inclusion for people with disabilities has been given statutory endorsement through the Disability Act ([<reflink idref="bib20" id="ref4">20</reflink>]). These changes that have occurred in service delivery have had both a beneficial and a detrimental effect on the Quality of Life (QoL) of the family ([<reflink idref="bib7" id="ref5">7</reflink>]). Parents are electing to care for their child/adult with an intellectual disability at home but face difficulties trying to reconcile personal, family and professional conflicts in so doing, whilst negotiating some complex barriers to access support services such as respite, health or social care and early intervention.</p> <hd id="AN0058058556-2">Literature review</hd> <p>Although concerns about the role and support of informal carers are a focus of attention, little is known about the experience of caring from the perspective of parents with a child with an intellectual disability in Ireland ([<reflink idref="bib31" id="ref6">31</reflink>]). For some parents, meeting the physical needs of their child/adult with an intellectual disability became an issue during adolescence and young adulthood for parents who were ageing ([<reflink idref="bib35" id="ref7">35</reflink>]). As longevity in the population of people with an intellectual disability increases ([<reflink idref="bib3" id="ref8">3</reflink>]), the provision of support to families caring for adults and children with an intellectual disability is emerging as a fundamental element of community‐based care. In Ireland, there are relatively few community intellectual disability nurses to provide interventions to families. Thus, respite care is often a form of temporary daytime or overnight support offered to parents ([<reflink idref="bib17" id="ref9">17</reflink>]).</p> <hd id="AN0058058556-3">Respite care</hd> <p>As a result of inter alia better pre‐, peri‐ and postnatal intervention, survival rates of children with intellectual disabilities are improving, whilst numbers cared for in congregate setting is declining ([<reflink idref="bib3" id="ref10">3</reflink>]). With greater policy emphasis on family centred care ([<reflink idref="bib14" id="ref11">14</reflink>]), parents are encouraged to be involved not only in everyday parenting skills but also in medical aspects of care that would earlier in the twentieth century have been considered the work of professionals ([<reflink idref="bib39" id="ref12">39</reflink>]). The emotional and physical demands that are being placed on parents and families of children with disabilities through keeping the child at home are significant ([<reflink idref="bib16" id="ref13">16</reflink>]). Many studies have been carried out to examine the impact that a child with an intellectual disability at home has on parents and families ([<reflink idref="bib21" id="ref14">21</reflink>]; [<reflink idref="bib24" id="ref15">24</reflink>]; [<reflink idref="bib42" id="ref16">42</reflink>]; [<reflink idref="bib49" id="ref17">49</reflink>]), and several studies have identified respite care as a means of addressing the issues identified ([<reflink idref="bib2" id="ref18">2</reflink>]; [<reflink idref="bib15" id="ref19">15</reflink>]; [<reflink idref="bib23" id="ref20">23</reflink>]). Internationally, respite care is the most prevalent type of family support offered ([<reflink idref="bib17" id="ref21">17</reflink>]). [<reflink idref="bib47" id="ref22">47</reflink>] defined respite care:</p> <p>As a generic term for different types of interventions aimed at providing support and relief to informal carers by (temporarily) easing the burden of the care giving task, with the objective to increase or restore the carer's ability to bear this load</p> <p>Respite care can take many forms including short breaks provided by the family ([<reflink idref="bib32" id="ref23">32</reflink>]), short breaks of a few hours provided by an agency ([<reflink idref="bib32" id="ref24">32</reflink>]) and overnight residential care. Studies have found that the respite care experience may not always be positive. In some cases for parents, it has been found to be a distressing experience because of concerns regarding quality of care delivery and poor facilities ([<reflink idref="bib19" id="ref25">19</reflink>]; [<reflink idref="bib25" id="ref26">25</reflink>]). Others studies have shown parents using respite care may experience guilt ([<reflink idref="bib23" id="ref27">23</reflink>]; [<reflink idref="bib36" id="ref28">36</reflink>]) or increased stress ([<reflink idref="bib2" id="ref29">2</reflink>]; [<reflink idref="bib19" id="ref30">19</reflink>]; [<reflink idref="bib23" id="ref31">23</reflink>]). Despite these negative points of view, other studies reported positive effects of respite care, including the creation of relaxation time for the primary carer ([<reflink idref="bib2" id="ref32">2</reflink>]; [<reflink idref="bib19" id="ref33">19</reflink>]; [<reflink idref="bib32" id="ref34">32</reflink>]; [<reflink idref="bib33" id="ref35">33</reflink>]) and time to devote to siblings ([<reflink idref="bib16" id="ref36">16</reflink>]; [<reflink idref="bib23" id="ref37">23</reflink>]; [<reflink idref="bib32" id="ref38">32</reflink>]).</p> <hd id="AN0058058556-4">Quality of life</hd> <p>In recent years, there has been a surge of interest in Quality of Life (QoL).However, as a concept it has underpinnings that date back as far as Aristotle's exploration of the 'the good life' ([<reflink idref="bib18" id="ref39">18</reflink>]). QoL is a popular measure of outcomes ([<reflink idref="bib4" id="ref40">4</reflink>]). [<reflink idref="bib1" id="ref41">1</reflink>] indicate that outcomes such as symptoms, mood and general health status are of particular interest to nursing researchers. On the other hand, it is a concept that has generated some confusion and controversy in terms of its definition and measurement ([<reflink idref="bib1" id="ref42">1</reflink>]). It is important to differentiate between the QoL of the person with an ID, their parents/carer and that of the wider family unit.</p> <p>In the field of intellectual disability, interest in QoL dates back to the late 1970s ([<reflink idref="bib8" id="ref43">8</reflink>]) and it has become increasingly a focus for research in disabilities ([<reflink idref="bib43" id="ref44">43</reflink>]). The intellectual disability field in general is relatively young and as a result of this much remains to be learned ([<reflink idref="bib13" id="ref45">13</reflink>]). [<reflink idref="bib8" id="ref46">8</reflink>] argue that changes have taken place in the care of people with an intellectual disability as a result of policy and societal changes, such as social role valorisation, inclusion and equal rights. The changes identified as a result of these movements include in many jurisdictions the movement of people with an intellectual disability from institutions to community settings ([<reflink idref="bib38" id="ref47">38</reflink>]). Also, many children with an intellectual disability now attend mainstream schools and work in the community ([<reflink idref="bib34" id="ref48">34</reflink>]). [<reflink idref="bib8" id="ref49">8</reflink>] recognise the need to look at the effects of the implementation of these movements from a QoL perspective. [<reflink idref="bib46" id="ref50">46</reflink>] also recognise these changes and attach importance to the need for further research concerning the impact that caring for a child with a disability at home has on the family unit and which of these impacts can be successfully addressed by service providers.</p> <p>Some studies purport that enhanced QoL for parents or the family as a whole may possibly be the only acceptable outcome of services. However, [<reflink idref="bib43" id="ref51">43</reflink>] asserts that it is often an unrealistic and unattainable aspiration to 'enhance' a person's quality of life and it is a challenge that requires much productive change in service delivery and practices. It is debateable whether or not it is the role of the state/service providers to enhance peoples' QoL. [<reflink idref="bib41" id="ref52">41</reflink>] suggest that much of the stress and burden experienced by caregivers is related to inadequate, uncoordinated and hard to access services. It should be recognised that parents and families are a powerful source of information and service providers should take into consideration their perspectives when designing and distributing support services.</p> <p>If respite care services are to meet the needs and expectations of families seeking to access them, then studies should include a focus on quality of life outcomes. [<reflink idref="bib6" id="ref53">6</reflink>] argue that services as a whole are organised to support parents, so that they can lead lives that are in acquiescence with their own values, abilities and wishes. However, until recent years, much of the research/theoretical work that has been undertaken regarding QoL in the context of intellectual disabilities relates primarily to the person with an intellectual disability. More recent studies are examining the concept in the broader context of family life as a whole ([<reflink idref="bib8" id="ref54">8</reflink>]; [<reflink idref="bib29" id="ref55">29</reflink>]). Moreover, cognisance needs to be given to the fact that although research relating to the concept of QoL in healthcare has been extensive, its use in the field of intellectual disability nursing is relatively new ([<reflink idref="bib37" id="ref56">37</reflink>]). Much of the research to date has been qualitative in nature and has been conducted by community services, psychiatric, psychology and social study departments with few being nurse led. In light of this, it is justifiable that a descriptive design be used, as [<reflink idref="bib40" id="ref57">40</reflink>] affirms that for a relatively new research area emphasis should be placed on descriptive studies to gain a better understanding of parents needs.</p> <hd id="AN0058058556-5">Aim of the study</hd> <p>The aim of this research study was to describe the QoL of parents of children and adults with intellectual disabilities who are availing of respite care. [<reflink idref="bib3" id="ref58">3</reflink>] articulate the fact that respite care is one of Irish services in which there is a shortfall when compared to demand. Little work has been done to explore the impact of respite care on QoL in this context. QoL is a multidimensional concept influenced by factors such as family life, relationships, work and standards of living and is based on needs, choices and control ([<reflink idref="bib43" id="ref59">43</reflink>]). The objective for the study therefore was to examine the perceived QoL of parents, with a child/adult with intellectual disability undergoing respite care. The purpose of conducting the study was to inform the development of respite care services to examine parental needs and preferences for respite care and its impact on their QoL.</p> <hd id="AN0058058556-6">Method</hd> <p>A quantitative descriptive study design was employed to describe the QoL of parents of children/adults with an intellectual disability living at home and undergoing respite care. Following ethical approval from the relevant ethical committees, a research study pack was sent to 150 parents of children/adults with an intellectual disability who were availing of respite care within a large service provider in the south of Ireland via the respite care co‐ordinator. Each pack consisted of a self‐report questionnaire, a consent form, information leaflet to the parents, a covering letter and a stamp addressed envelope for the return of the completed questionnaire. The data were analysed using Statistical Package for Social Sciences (spss) version 13 for Windows. Descriptive statistics were used to analyse the data; these were then summarised using tables, charts, frequency counts, percentages and measures of central tendencies.</p> <hd id="AN0058058556-7">The questionnaire</hd> <p>The research instrument that was used in this study was "<emph>The Family Quality of Life Survey: Main caregivers of people with intellectual or developmental disabilities"</emph> ([<reflink idref="bib10" id="ref60">10</reflink>]). The instrument was chosen because it takes into consideration the fact that QoL is multidimensional and influenced by many factors, comprised of generally the same dimensions for all people, but that certain aspects may be of more importance than others for some people,. However, as it is inclusive of both objective and subjective elements, it is best studied using multiple methodologies and finally studied with the purpose of understanding and improving QoL. The <emph>Family Quality of Life Survey</emph> (2006) (FQOLS) is a self‐report questionnaire consisting of 54 forced choice and open‐ended question items. The instrument examines QoL under nine core domains. These are (i) health of the family, (ii) financial well‐being, (iii) family relationships, (iv) support from other people, (v) support from disability‐related services, (vi) influence of values, (vii) careers and preparing for careers, (viii) leisure and recreation and (ix) community interaction. The questionnaire is divided into sections A and B relating to all the nine domains. Section A is composed of quantitative questions about specific issues within each of the nine core domains. Each domain has six indicators thus yielding 54 items. There is space provided for the participant to give qualitative information if so desired. Section B consists of six questions, one question relates to each of the core concepts as follows: (i) importance, (ii) opportunities, (iii) initiative, (iv) attainment, (v) stability and (vi) satisfaction. Each question is scored using a five‐point Likert scale ranging from (<reflink idref="bib1" id="ref61">1</reflink>) 'satisfied' to (<reflink idref="bib5" id="ref62">5</reflink>) 'very dissatisfied' and is scored separately under 'perceived importance' and 'level of satisfaction'.</p> <p>The initial version of this tool was developed in [<reflink idref="bib5" id="ref63">5</reflink>]. Through the analysis and interpretation of the data derived from the survey over a 4‐year period, the authors were able to critically evaluate its content. A comprehensive evaluation of the psychometric properties of the revised survey is needed but preliminary results with regard to reliability and validity are reported to be promising ([<reflink idref="bib28" id="ref64">28</reflink>]). Correlations have been found between 7 of the 9 satisfaction life areas in a study examining offspring with Down syndrome, other analyses: [<reflink idref="bib11" id="ref65">11</reflink>], [<reflink idref="bib9" id="ref66">9</reflink>] have found that the concepts vary across the different domains; therefore, the survey appears to be distinctly measuring aspects of QoL. Cronbach's alphas for each of the domains vary ranging from 0.603 to 0.922, which demonstrates that the FQOLS was found to be a valid and consistent tool.</p> <hd id="AN0058058556-8">Results</hd> <p></p> <hd id="AN0058058556-9">Profile of parents</hd> <p>Information generated pertaining to the demographics of the sample identified that forty of the respondents were mothers, five were fathers and two were siblings responding on behalf of the parents. The age range of the mothers was 33–81 years and fathers were 36–77 years. In respect of family, unit nine comprised a one‐parent family, twenty‐six comprised a two‐parent family and two specified as 'other'. Twenty‐one families lived in a rural setting, twelve lived in a small town, seven lived in a large urban centre and four lived in a small city. With regard to financial status, thirty‐eight described it as average, four as above average, three as below average and one as well above average (Table 1).</p> <p>1  Caregiver Profile (n = 49)</p> <p> <ephtml> <table><thead valign="bottom"><tr><th>Variables</th><th><italic>n</italic></th><th /><th /><th /></tr></thead><tbody valign="top"><tr><td>Relationship to child/adult</td><td> </td><td> </td><td> </td></tr><tr><td> Mother</td><td>40</td><td> </td><td> </td><td> </td></tr><tr><td> Father</td><td>5</td><td> </td><td> </td><td> </td></tr><tr><td> Siblings</td><td>2</td><td> </td><td> </td><td> </td></tr><tr><td> Missing Data</td><td>2</td><td> </td><td> </td><td> </td></tr><tr><td>Age of respondent</td><td> </td><td>Range (Years)</td><td>Mean (Yearrs)</td><td>Standard Deviation (Years)</td></tr><tr><td> Mother</td><td>40</td><td>33–81</td><td>55.85</td><td>12.91</td></tr><tr><td> Father</td><td>5</td><td>36–77</td><td>57.58</td><td>12.13</td></tr><tr><td> Siblings</td><td>2</td><td>Missing Data</td><td>Missing Data</td><td>Missing Data</td></tr><tr><td>Marital status</td><td /><td /><td /></tr><tr><td> One parent Family</td><td>9</td><td> </td><td> </td><td> </td></tr><tr><td> Two parent family</td><td>37</td><td> </td><td> </td><td> </td></tr><tr><td> Other</td><td>2</td><td> </td><td> </td><td> </td></tr><tr><td> Missing Data</td><td>1</td><td> </td><td> </td><td> </td></tr><tr><td>Community lived in</td><td> </td><td> </td><td> </td></tr><tr><td> Large Urban Centre</td><td>7</td><td> </td><td> </td><td> </td></tr><tr><td> Small City</td><td>4</td><td> </td><td> </td><td> </td></tr><tr><td> Small town</td><td>12</td><td> </td><td> </td><td> </td></tr><tr><td> Rural</td><td>21</td><td> </td><td> </td><td> </td></tr><tr><td> Other</td><td>3</td><td> </td><td> </td><td> </td></tr><tr><td> Missing Data</td><td>2</td><td> </td><td> </td><td> </td></tr><tr><td>Financial status</td><td> </td><td> </td><td> </td></tr><tr><td> Below average</td><td>3</td><td> </td><td> </td><td> </td></tr><tr><td> Average</td><td>38</td><td> </td><td> </td><td> </td></tr><tr><td> Above average</td><td>4</td><td> </td><td> </td><td> </td></tr><tr><td> Well above average</td><td>1</td><td> </td><td> </td><td> </td></tr></tbody></table> </ephtml> </p> <hd id="AN0058058556-10">Health of the family</hd> <p>Health of the family was viewed as the most important domain with regard to QoL, with the majority of parents rating it as 'very important' (see Table 2). The majority of parents (<reflink idref="bib34" id="ref67">34</reflink>) reported having no concerns relating to their child's physical/mental health. Those who had expressed concern (<reflink idref="bib13" id="ref68">13</reflink>) cited the reasons as being long waits for services (<reflink idref="bib18" id="ref69">18</reflink>), services not available (<reflink idref="bib7" id="ref70">7</reflink>) and no known treatment for their health concern (<reflink idref="bib7" id="ref71">7</reflink>). Positively, the majority of families (<reflink idref="bib38" id="ref72">38</reflink>) demonstrated much initiative in maintaining their health with displaying varying levels of effort to do so. Negatively, some families made 'little' (<reflink idref="bib4" id="ref73">4</reflink>) or 'hardly at all' (<reflink idref="bib3" id="ref74">3</reflink>) effort. Overall, the majority of families (<reflink idref="bib46" id="ref75">46</reflink>) were 'satisfied' with family health. No significant correlations were found for opportunities or initiative; however, level of attainment of overall family health was related positively to the satisfaction with this attainment (<emph>r</emph> = .568, <emph>P</emph> = .000).</p> <p>2  Levels of importance of domains of quality of life</p> <p> <ephtml> <table><thead valign="bottom"><tr><th>Domain</th><th>Very</th><th>Quite</th><th>Somewhat</th><th>A little</th><th>Hardly at all</th><th>Missing data</th></tr></thead><tbody valign="top"><tr><td>Health of the family</td><td>38</td><td>8</td><td>–</td><td>–</td><td>–</td><td>3</td></tr><tr><td>Financial well‐being</td><td>18</td><td>15</td><td>12</td><td>–</td><td>1</td><td>3</td></tr><tr><td>Family relationships</td><td>31</td><td>13</td><td>2</td><td>1</td><td>–</td><td>2</td></tr><tr><td>Support from others</td><td>11</td><td>17</td><td>7</td><td>3</td><td>6</td><td>5</td></tr><tr><td>Support from disability services</td><td>30</td><td>10</td><td>3</td><td>2</td><td>–</td><td>4</td></tr><tr><td>Influence of values</td><td>14</td><td>13</td><td>16</td><td>2</td><td>–</td><td>4</td></tr><tr><td>Careers</td><td>26</td><td>13</td><td>3</td><td>1</td><td>–</td><td>6</td></tr><tr><td>Leisure and recreation</td><td>9</td><td>22</td><td>11</td><td>2</td><td>3</td><td>2</td></tr><tr><td>Community interaction</td><td>13</td><td>16</td><td>14</td><td>3</td><td>–</td><td>3</td></tr></tbody></table> </ephtml> </p> <hd id="AN0058058556-11">Financial well‐being</hd> <p>Financial well‐being is one area that can positively/negatively impact on QoL. Twelve of the parents in this study decided to give up their careers because of care‐giving responsibilities. The majority (<reflink idref="bib38" id="ref76">38</reflink>) of families described their income as 'average' (see Table 1). All the families except one placed some level of importance on the family's financial well‐being (see Table 2). The majority of families (<reflink idref="bib29" id="ref77">29</reflink>) reported being 'satisfied' with the financial well of the family; however, some of the qualitative comments provided cast aspersions to the generalisation of the results e.g. Respondent 11 "<emph>I think financially we could do with more to improve our lifestyle"</emph> and Respondent 26 <emph>"we could do with a little more"</emph> and Respondent 31 <emph>"just getting by".</emph> The level of opportunities for finance was positively related to the level of satisfaction (<emph>r</emph> = .391, <emph>P</emph> = .009), and the level of attainment was also positively correlated to the level of satisfaction (<emph>r</emph> = .472, <emph>P</emph> = .001). No significant correlation was found for initiative and satisfaction.</p> <hd id="AN0058058556-12">Family relationships</hd> <p>This study has found that the day‐to‐day responsibility for the running of the house falls to one or both of the parents and in some cases siblings. Much of the care giving and household responsibility falls to the mother. The main responsibility of fathers was reported as outside work such as gardening and earning money. The majority of the families (<reflink idref="bib47" id="ref78">47</reflink>) rated family relationships as being important to varying degrees (see Table 2). The majority of families (<reflink idref="bib44" id="ref79">44</reflink>) made considerable efforts to maintain family relationships with again a small minority (<reflink idref="bib3" id="ref80">3</reflink>) making only 'a little effort'. Overall, satisfaction was expressed with family relationships. This study found that the level of opportunities for family members to keep and enhance family relationships was positively correlated to a moderate degree with the level of satisfaction (<emph>r</emph> = .323, <emph>P</emph> = .029). The level of attainment of positive family relationships was also strongly correlated with the level of satisfaction (<emph>r</emph> = .738, <emph>P</emph> = .000), as was level of effort (<emph>r</emph> = .714, <emph>P</emph> = .000).</p> <hd id="AN0058058556-13">Support from other people</hd> <p>The lack of support from other people that was experienced by the parents in this study is consistent with findings from previous research studies in the area. Twenty‐six of the families reported getting 'hardly any help at all'. This lack of support, impacts on the overall QoL of the parents, as many of the parents are experiencing reduced social lives as a result of the care‐giving process. Social activity and getting out of the house can be limited and twenty‐eight of the respondents in this study indicated that there social lives outside the home were 'less/much less than they would like it to be'. This is consistent with findings of [<reflink idref="bib49" id="ref81">49</reflink>] who reported that mothers could experience social isolation and difficulty in getting out of the house. Many of the families (<reflink idref="bib32" id="ref82">32</reflink>) were satisfied with the support they received from disability services; however, some barriers that were identified include; long waits for services, not getting enough help from services and a lack of availability in their area. In responses to an open‐ended question 'What do you think would improve your QoL? ', the following answers were yielded: "<emph>extra respite as the need presents"</emph> (Respondent 36), <emph>"More respite care on a more regular basis"</emph> (Respondent 26) and "<emph>more respite care on a more regular basis"</emph> (Respondent 5), giving a clear indication of support needs. There were no significant correlations found between any of the variables and overall satisfaction.</p> <hd id="AN0058058556-14">Influence of values</hd> <p>From the literature, it is not greatly evident that the influence of values impacts positively/negatively on QoL. Whilst the families reported holding values of different types (religious, spiritual or cultural), only thirteen found them to be important to one's QoL. It could be concluded therefore that the values held by families help in how they appraise having a child/adult with an intellectual disability rather than the support they receive from these communities. The level of initiative was correlated strongly with levels of satisfaction (<emph>r</emph> = .717, <emph>P</emph> = .000) as was level of attainment (<emph>r</emph> = .612, <emph>P</emph> = .000).</p> <hd id="AN0058058556-15">Careers and preparing for careers</hd> <p>Twelve parents reported having to give up careers as a result of care giving. Careers were rated at different levels of importance for all the respondents (see Table 2). As previously discussed, under financial well‐being, the effect of the loss of a career can impact on the financial well‐being of a family which ultimately affects on the QoL of the family. One respondent who gave up her career to care for her child with intellectual disability related the following regarding careers "<emph>I gave up work to look after my daughter....it is the best for my daughter but I hope to return to work when she is older..."</emph> Respondent 46, also Respondent 34 reported "<emph>that she herself will be unable to pursue her career of choice due to age constraints...I have accepted that my career is not that important where before I would be more motivated...I work part time and whilst it would be easier to stay at home I do enjoy the social contact of work".</emph> These comments would be consistent too with previous findings by [<reflink idref="bib42" id="ref83">42</reflink>] who reported that 9 of the 11 women in their sample had to give up work with many reported missing the social contact of the work environment. Level of career and educational opportunities was not correlated significantly with the level of satisfaction. However, the level of initiative to a moderate degree positively correlated with satisfaction (<emph>r</emph> = .360, <emph>P</emph> = .029), and level of attainment was also so correlated (<emph>r</emph> = .460, <emph>P</emph> = .004).</p> <hd id="AN0058058556-16">Leisure and recreation</hd> <p>Leisure and recreation were deemed important to QoL of the parents (<reflink idref="bib42" id="ref84">42</reflink>). Many reported partaking in leisure and recreation activities but that often the care‐giving process resulted in parents pursuing separate forms of leisure and recreation so that one parent would be available to mind the child/adult with intellectual disability. In many instances, the one or both parents enjoyed pursuing leisure activities with the child/adult with an intellectual disability such as swimming, cinema and walking. Qualitative commentary outlining difficulties experienced include the following; Respondent 22 reported that "<emph>because of my child's behavioural problems it is quite difficult to go out in public‐less hassle if you stay at home",</emph> Respondent 31 expressed major difficulties with community interaction as follows "<emph>some aspects of his behaviour are socially unacceptable and are kept secret...this is a burden and effects all aspects of QoL of the individual and carer...he has been attacked by thugs and targeted by sexual predators".</emph> There are many positive experiences reported too such as community involvement for example Caring and Sharing Society, Special Olympics and simply going to the local pub or Gaelic Athletic Association match. Considering the disparities that exist with community interaction, only four families expressed dissatisfaction with QoL. Level of opportunity for leisure and enjoyment of life correlated strongly with level of satisfaction (<emph>r</emph> = .607, <emph>P</emph> = .000). Level of initiative also correlated strongly (<emph>r</emph> = .528, <emph>P</emph> = .000) as did attainment (<emph>r</emph> = .535, <emph>P</emph> = .000). Also, the level of opportunity for interaction with the community was moderately correlated with the level of satisfaction (<emph>r</emph> = .375, <emph>P</emph> = .013), while initiative was strongly correlated (<emph>r</emph> = .551, <emph>P</emph> = .000) as was attainment (<emph>r</emph> = .501, <emph>P</emph> = .001).</p> <hd id="AN0058058556-17">Overall quality of life</hd> <p>When the parents were asked to describe their QoL, the majority (<reflink idref="bib43" id="ref85">43</reflink>) reported it to be between 'good' and 'excellent'. Levels of satisfaction were found to be high with varying levels of satisfaction experienced by twenty‐three families; three families expressed levels of dissatisfaction. These positive results are reassuring and demonstrate the fact that parents of children/adults with an intellectual disability can and do experience QoL.</p> <p>The qualitative commentaries for this section do suggest that some parents are more burdened than others and are experiencing reduced QoL. Some examples of which are Respondent 18 "<emph>outside of respite services I have no help, we have no public transport suitable for a wheelchair...we cannot get out much",</emph> Respondent 34 "<emph>the personality of our child makes us happy...poor marital relationships and anger create stress",</emph> Respondent 22 "<emph>the distance I have to drive every week to get my child to school takes away from my quality of life",</emph> Respondent10 "<emph>anger and resentment of siblings...blame the mother...mum can feel sad and lonely at these accusations...need for sibling counselling".</emph> Many parents expressed no desire for an improvement in QoL.</p> <hd id="AN0058058556-18">Discussion</hd> <p>The purpose of this study was to describe the QoL of parents of children/adults with an intellectual disability who are availing of respite care. The findings of this study indicate that the primary care‐giving role within the family is the responsibility of the mother. These findings are consistent with previous research findings ([<reflink idref="bib21" id="ref86">21</reflink>]; [<reflink idref="bib25" id="ref87">25</reflink>]; and [<reflink idref="bib48" id="ref88">48</reflink>]). In relation to diagnosis/syndromes, the findings are significant as only one child had a diagnosis of Autism, 13 were diagnosed as Down syndrome and 21 were diagnosis of unknown origin. No children were diagnosed with Praeder‐Willi, Dual diagnosis, Foetal Alcohol Spectrum Disorder or Pervasive Development Disability. It could be concluded that the specific diagnosis of a child's disability could impact on family QoL. This has been alluded to in previous research studies by [<reflink idref="bib27" id="ref89">27</reflink>] who identify that 'family issues' become more complicated when they are faced with difficult syndromes. This is a significant factor that could be influencing the overall positive outcome of this study is the fact that 13 of the children/adults in this study were diagnosed as Down syndrome, therefore, experiencing 'the Down syndrome advantage' a phenomenon identified by [<reflink idref="bib26" id="ref90">26</reflink>].</p> <p>The majority of respondents identified that family relationships were important to them; however, despite this fact, the amount of support they received from family and others is little to none. As a result of the lack of support, parents are experiencing reduced social lives and often have to socialise separately. Whilst the majority of parents identified that they were satisfied with the support that they received for disability services, they also identified that they would like more respite, flexibility and on a regular basis. Also, of significance is the fact that whilst the influence of values was rated highly, it was more for how it helped them to appraise having a child/adult with an intellectual disability rather than any other formal type of support.</p> <p>Financial well‐being is an area that can negatively/positively impact on ones life regardless of the presence of a child/child with an intellectual disability. Significant to this study, several mothers identified that they had to give up work to look after their child/adult with an intellectual disability. This had a significant impact on the QoL of the mothers and the families. The mothers reported being lonely and missed the social side of work and also the loss of earnings impacted on the family unit as a whole. Financial difficulties were also exacerbated by the cost of medical care for the child/adult with intellectual disability.</p> <p>The literature review found that many parents do experience difficulties as a result of care giving. Moreover, much of the past research indicates that parents can and do experience‐negative impacts as a result of care giving, which is consistent with the findings of this study. The impact of caring for a child/adult with an intellectual disability was highlighted during the discussion of the different QoL domains identified for example effects on careers, financial well‐being. These build on findings of previous research reporting similar negative effects ([<reflink idref="bib2" id="ref91">2</reflink>]; [<reflink idref="bib31" id="ref92">31</reflink>] and [<reflink idref="bib49" id="ref93">49</reflink>]). A positive outcome is the findings of this research study adds to the limited numbers of studies that report positive care‐giving experiences ([<reflink idref="bib21" id="ref94">21</reflink>]; [<reflink idref="bib48" id="ref95">48</reflink>]).</p> <hd id="AN0058058556-19">Limitations</hd> <p>Whilst 38% (<emph>n </emph>=<emph> </emph>49) of the sample returned the questionnaires, caution needs to be exercised as it may be incongruous to take it for granted that the people who responded are representative of the overall sample. Therefore, the ability to generalise the findings of this study to the greater population is limited. A reason that could be attributed to the low response rate was the length of the survey instrument which could have caused 'a response burden'. Also, cognisance needs to be given to the fact that the parents who did not respond may be the parents most burdened by the care‐giving task. They may not have had the time, energy or motivation to complete the survey and may be disillusioned by care giving in general. Despite the low response rate, this study is a contribution to the concept of QoL in this context; however, further exploration perhaps with the use of interviews is warranted to gain an in‐depth picture of the QoL of the parents on a whole.</p> <hd id="AN0058058556-20">Conclusion</hd> <p>Some studies purport that enhanced QoL may possibly be the only acceptable outcome of services. However, [<reflink idref="bib43" id="ref96">43</reflink>] asserts that it is often an unrealistic and unattainable aspiration to 'enhance' a person's quality of life and it is a challenge that requires much productive change in service delivery and practices. The responses to the open‐ended question relating to QoL respite care and the lack of services received much focus and attention. It is evident from the findings of this study that respite care demands far exceed supply and many families are left waiting for long periods of time. A key question concerns who is the primary subject of enhanced quality of life. Is it the person with an intellectual disability, the primary carers or both? If it is the primary carers' quality of life then what constitutes an enhancement in the context of respite care? Recently, [<reflink idref="bib44" id="ref97">44</reflink>] writing on the subject of life happiness from a positive psychological perspective has differentiated between a 'happy', an 'engaged' and a 'meaningful' existence for human beings. This is a challenging concept to apply to quality of life; primary carers particularly parents may find a greater degree of fulfilment in caring for a child/adult with a disability in a hands on and engaged manner and may be expected to engage from a family‐centred paradigm. Whether such engagement leads necessarily to a happier or more meaningful existence is debateable given the burden of caring experienced. More work needs to be carried out to establish what services are deemed most valuable to parents and how their needs can be met to the best of the Health Service Providers (HSP) ability. Governmental funding and human resource issues often impinge on services being provided and unfortunately this is outside the remit of the HSP control. However, assumptions aside the positive findings of this study warrant further consideration and suggest that among those who responded, the experience of care giving may be in some measure beneficial to family QoL.</p> <ref id="AN0058058556-21"> <title> References </title> <blist> <bibl id="bib1" idref="ref41" type="bt">1</bibl> <bibtext> Anderson K. & Burckhardt C. (1999) Conceptualisation and measurement of quality of life as an outcome variable for health care intervention. 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  Data: Quality of Life: A Survey of Parents of Children/Adults with an Intellectual Disability Who Are Availing of Respite Care
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  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Caples%2C+Maria%22">Caples, Maria</searchLink><br /><searchLink fieldCode="AR" term="%22Sweeney%2C+John%22">Sweeney, John</searchLink>
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22British+Journal+of+Learning+Disabilities%22"><i>British Journal of Learning Disabilities</i></searchLink>. Mar 2011 39(1):64-72.
– Name: Avail
  Label: Availability
  Group: Avail
  Data: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 9
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2011
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Health+Services%22">Health Services</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Retardation%22">Mental Retardation</searchLink><br /><searchLink fieldCode="DE" term="%22Quality+of+Life%22">Quality of Life</searchLink><br /><searchLink fieldCode="DE" term="%22Parents%22">Parents</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Databases%22">Databases</searchLink><br /><searchLink fieldCode="DE" term="%22Respite+Care%22">Respite Care</searchLink><br /><searchLink fieldCode="DE" term="%22Surveys%22">Surveys</searchLink><br /><searchLink fieldCode="DE" term="%22Caregiver+Role%22">Caregiver Role</searchLink><br /><searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Children%22">Children</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Caregiver+Relationship%22">Parent Caregiver Relationship</searchLink><br /><searchLink fieldCode="DE" term="%22Disabilities%22">Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Inclusion%22">Inclusion</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Ireland%22">Ireland</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/j.1468-3156.2010.00619.x
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1354-4187
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Two-thirds of the people registered on the Irish National Intellectual Disability Database (NIDD) reside at home with family members frequently supporting them (Kelly et al., "National Intellectual Disability Database Committee Annual Report 2006," Health Research, 2007). Use of respite care services by parents with a child/adult with an intellectual disability (ID) in Ireland is growing in the context of social policy initiatives for greater social inclusion of people with disabilities. Irish parents who care for their child/adult with an ID at home are not asking for the care of their child/adult to be taken away from them, but to assist them in this role and to help them to meet the demands of personal, family, social and work life, they need to be supported with reliable, flexible and responsive services (Redmond & Richardson, "J Appl Res Intellect Disabil," 2003; 16: 205-218). Parents often have to negotiate complex barriers to access support services such as respite, health or social care (Sloper, "Child Care Health Dev," 1999; 25: 85-99). Chadwick et al., ("Child Adolesc Ment Health" 2002; 7: 66-72) suggest that respite care was primarily regarded as a service that was provided to relieve parental burdens. This article draws on a recent study that investigated the quality of life of parents of children/adults who have an intellectual disability and who are availing of respite care. The findings suggest that parents are experiencing "good" to "excellent" quality of life and that demand exceeds supply. More work needs to be carried out to establish what services are deemed most valuable to parents and to show how their needs can be met to the best of the Health Service Providers ability.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2011
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ927847
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ927847
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      – Type: doi
        Value: 10.1111/j.1468-3156.2010.00619.x
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      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 9
        StartPage: 64
    Subjects:
      – SubjectFull: Health Services
        Type: general
      – SubjectFull: Mental Retardation
        Type: general
      – SubjectFull: Quality of Life
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      – SubjectFull: Caregiver Role
        Type: general
      – SubjectFull: Caregivers
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      – SubjectFull: Children
        Type: general
      – SubjectFull: Adults
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      – SubjectFull: Disabilities
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      – SubjectFull: Inclusion
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      – SubjectFull: Ireland
        Type: general
    Titles:
      – TitleFull: Quality of Life: A Survey of Parents of Children/Adults with an Intellectual Disability Who Are Availing of Respite Care
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            NameFull: Sweeney, John
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            – TitleFull: British Journal of Learning Disabilities
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