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‘How long are we able to go on?’ Issues faced by older family caregivers of adults with disabilities
Abstract
When sons and daughters with disabilities live with their parents all their lives, this can sometimes be difficult for the parents as well as the sons and daughters. We asked the parents what they like and dislike about having their sons and daughters living with them and what makes it easy and what makes it difficult. The parents who took part in this study told us that
Research-informed policy and practice is needed for older caregivers of adult sons/daughters with disabilities. These caregivers are often under tremendous stress because of failing health, financial pressures, bereavement and worry about the future of their sons/daughters. Twenty-nine older parents/caregivers of 27 adults with intellectual and/or developmental disabilities were interviewed to explore their views and experiences regarding long-term care and service arrangements, health and psychological needs and ‘future planning’. Findings show a severe lack of support, respite care and future planning which causes high stress levels for caregivers. Policy makers and researchers working in this field need to take into consideration the needs of older caregivers when making future plans for adults with disabilities.
... Western literature show that parenting young adults with ASD also come along with other challenges such as the burden of physical and psychological health problems (Hollon and Dimidjian 2009;Hill and Rose 2009), financial challenges (Hogg et al. 2000;Oti-Boadi 2017), future care of the child (Ambikile and Outwater 2012;Dillenburger and McKerr 2011;Heiman 2002;Oti-Boadi 2017), lack of appropriate support from family (Ambikile and Outwater 2012;Hill and Rose 2009;Oti-Boadi 2017) and other formal agencies that assist families (Ansello and Janicki 2000;Taggart et al. 2012;Unwin and Deb 2011) thereby increasing the stress levels experienced by parents (Falk et al. 2014;Oti-Boadi 2017). ...
... A second challenge of parents occurs as children become young adults. Parents start worrying and hoping that their children will have productive and meaningful lives by getting the opportunity to further their education, get into employment and be financially and physically independent (Blacher et al. 2010;Dillenburger and McKerr 2011;Heiman 2002;Morrell and Palmer 2006). This concern is prevalent among parents of children with disability; however, Blacher et al. (2010) found in their study that parents of children with ASD were more worried about the future care of the child compared to parents of children with Down syndrome, Cerebral palsy and other intellectual disabilities. ...
... These concerns among Ghanaian mothers are similar to experiences of mothers in western countries too (Blacher et al. 2010;Cheak-Zamora et al. 2017;Dillenburger and McKerr 2011). ...
Global improvements in health care have resulted in improved longevity for the general population, including persons with autism spectrum disorders (ASD). Increasingly, many parents are living with and providing care for their young adults with ASD. Little, however, is known about the experiences of ageing parents of young adults with ASD, particularly in developing countries like Ghana. This study explored the unique experiences of nine ageing parents and their young adults with ASD using semi-structured interviews. Data were analysed using the thematic analysis approach. Findings from the analysis of their responses revealed five themes: psychological exhaustion, future uncertainties, planning for the future, isolation and stigmatization and social support. Findings of this study serve to extend the developmental perspective of caring for caregivers and adult persons with ASD, with implications for designing interventions for such population in developing regions.
... One reason for exclusion is that the behaviors of their adult children with ASD make it difficult for parents to engage typically in terms of social opportunities and obligations. Dillenburger and McKerr (2011) reported that dealing with behavioral problems was one of the greatest challenges for parents of adult children with I/DDs. Empirical evidence provided support for the prevalence of behavior problems and their adverse effects (e.g., strain and depressive symptoms) on parents with adult children with ASD (Barker et al., 2011;Orsmond, Seltzer, Greenberg, & Krauss, 2006). ...
... Structural and systemic limitations exacerbate social exclusion among parents who continue caregiving roles. Many parental caregivers of adults with I/DDs experienced a lack of support and respite care options (Dillenburger & McKerr, 2011). Most participants (72%) had not made future long-term plans for their child with disabilities, while others worried about future planning. ...
... Most participants (72%) had not made future long-term plans for their child with disabilities, while others worried about future planning. According to Dillenburger and McKerr (2011), parents of adult children with disabilities, including autism, need additional support in order to make long-term plans for their child's future. Many parents worried about the adequacy of residential options for their adult children with I/DDs and worry about poor care and possible abuse (Dillenburger & McKerr, 2009). ...
This article offers an examination of aging processes of lifelong caregivers and the possibilities for social exclusion place experienced by parents of adult children with autism spectrum disorder (ASD). This study of parental caregivers (n = 51) sheds light on how enduring caregiving roles can lead to social exclusion in three ways: misunderstanding of ASD and stigma, the complexity of the caregiving roles, and impact on daily routines including challenges with long-term planning for both the adult children and the parental caregivers. Implications for practice to address social exclusion include education and building greater communication ties among family member for family members and advocacy for more and higher quality services including respite care. This article concludes with discussion of the impact of this aging, yet caregiving population and the need for knowledge about aging processes and anticipating aging for these caregivers.
... Parents of children with autism tend to experience more mental health issues than parents of other children [22][23][24][25]. Providing lifespan care for adult sons/daughters with autism places a huge burden on aging caregivers [26,27] that can impact negatively on the mental health of families [28]. In addition, given that the "cost of autism" for governments is higher than the cost of cancer, strokes, and heart disease combined, i.e., annually £34 billion in the UK [29], parenting a child with autism throughout the lifespan can lead to economic exclusion [26,27,30]. ...
... Providing lifespan care for adult sons/daughters with autism places a huge burden on aging caregivers [26,27] that can impact negatively on the mental health of families [28]. In addition, given that the "cost of autism" for governments is higher than the cost of cancer, strokes, and heart disease combined, i.e., annually £34 billion in the UK [29], parenting a child with autism throughout the lifespan can lead to economic exclusion [26,27,30]. ...
... In sum, health, social care, and educational professionals are best placed to identify early signs of autism and to use this valuable 'window of opportunity' to put in place targeted and effective interventions. Lack of training leads not only to staff stress and burn-out [96,97], but more importantly, it increases services users' and caregiver burden and risk of economic hardship and mental health problems [22,27,98]. Currently, staff training in the UK (as exemplified in NI) falls considerably short of requirements and does not meet international standards of best practice. ...
Having well-trained staff is key to ensuring good quality autism services, especially since people affected with autism generally tend to have higher support needs than other populations in terms of daily living, as well as their mental and physical health. Poorly-trained staff can have detrimental effects on service provision and staff morale and can lead to staff burn-out, as well as increased service user anxiety and stress. This paper reports on a survey with health, social care, and education staff who work within the statutory autism services sector in the UK that explored their knowledge and training with regards to autism. Interview data obtained from staff and service users offer qualitative illustrations of survey findings. Overall, the findings expose an acute lack of autism-specific training that has detrimental impacts. At best, this training was based on brief and very basic awareness raising rather than on in-depth understanding of issues related to autism or skills for evidence-based practice. Service users were concerned with the effects that the lack of staff training had on the services they received. The paper concludes with a discussion of policy routes to achieving quality staff training based on international best practice. The focus is on improving the quality of life and mental health for services users and staff, as well as making potentially significant cost-savings for governments.
... For many parental caregivers of adult children with ASD, caregiving can be ongoing, exhausting, and challenging (Dillenburger & McKerr, 2011). Due to the nature of ASD, this condition often poses unique cultural, social, and behavioral challenges that can impact the level of care needed and demands placed on aging parental caregivers (Kang-Yi et al., 2018;Magiati et al., 2014). ...
... Parental caregivers of adult children with ASD may find themselves taxed from their ongoing caregiving demands and challenges (Blinded for Review, 2018;Dillenburger & McKerr, 2011). The roles and responsibilities assumed by parental caregivers of adults with ASD can be relentless and exhausting. ...
Family caregivers provide the predominance of care for loved ones requiring caregiving support in the United States. Quality of life and caregiver burden are impacted as caregivers age and their health declines. The purpose of this study was to determine if the domains of caregiver burden (time dependence, developmental, emotional, and impact of finances on caregiving) and informal social support were predictors of quality of life for aging parental caregivers of adult children with autism spectrum disorder (ASD). Participants (N = 320) included care-givers who were at least 50 years of age and had an adult child (18+) diagnosed with ASD. The findings indicated that three variables (developmental burden, emotional burden, and informal social support) entered the multiple linear regression analysis as significant predictors of quality of life after controlling for caregiver age and self-reported health. Social workers and other health professionals should be cognizant of health declines in caregivers that could impact their ability to provide care. They also should encourage family and friends to assist caregivers by providing emotional support and helping with everyday tasks. When visiting aging caregivers, professionals should look for signs of declining health and suggest the caregiver visit his or her primary care provider.
... The authors reported fundamental studies about these barriers, such as that of Davys and Haigh (2008) indicating the presence of a planning gap due to internal psychological figures. In the same direction, Dillenburger andMcKerr (2011) andStehlik (2000) highlighted the fact of feelings of helplessness, resignation, avoidance, denial, and guilt about not planning. A second relevant dimension was that of uncertainty, so the authors reporting previous articles (Eley et al., 2009;Pryce et al., 2017) showed how the subjects withdrew from the planning phase due to this additive burden. ...
... The authors reported fundamental studies about these barriers, such as that of Davys and Haigh (2008) indicating the presence of a planning gap due to internal psychological figures. In the same direction, Dillenburger andMcKerr (2011) andStehlik (2000) highlighted the fact of feelings of helplessness, resignation, avoidance, denial, and guilt about not planning. A second relevant dimension was that of uncertainty, so the authors reporting previous articles (Eley et al., 2009;Pryce et al., 2017) showed how the subjects withdrew from the planning phase due to this additive burden. ...
Background: The health professionals are involved in the paths of care for patients with different medical conditions. Their life is frequently characterized by psychopathological outcomes so that it is possible to identify consistent burdens. Besides the possibility to develop pathological outcomes, some protective factors such as resilience play a fundamental role in facilitating the adaptation process and the management of maladaptive patterns. Personal characteristics and specific indexes such as burdens and resilience are essential variables useful to study in-depth ongoing conditions and possible interventions. The study was aimed at highlighting the presence and the relations among factors as personal variables, burdens, and resilience, to understand health professionals' specific structure and functions.
Methods: The observation group was composed of 210 participants, 55 males (26.2%), and 155 females (73.8%), aged from 18 to 30 years old with a mean age of 25.92 years old ( SD = 3.33). The study considered personal characteristics of the subjects, such as age, gender, years of study, days of work per week, hours of work per week, and years of work. Our study had been conducted with the use of measures related to burdens (Caregivers Burden Inventory) and resilience (Resilience Scale for Adults).
Results: The performed analyses consisted of descriptive statistics, correlations, and regressions among the considered variables. Several significant correlations emerged among personal characteristics, CBI, and RSA variables. Specifically, age and work commitment indexes appeared to be significantly related to the development of burdens, differently from the years of study. Significant correlations emerged among personal and RSA variables, indicating precise directions for both domains. Age and gender were identified as predictors to perform multivariate regression analyses concerning CBI factors. Significant dependence relations emerged with reference to all CBI variables.
Conclusion: Pathological outcomes and resilience factors represent two sides of the health professionals' experiences, also known as “invisible patients.” Greater knowledge about present conditions and future possibilities is a well-known need in literature so that the current analyses considered fundamental factors. In line with state of the art, future studies are needed in order to deepen elusive phenomena underlying maladjustment.
... In addition, the literature also indicated that parents did not discuss future planning with their offspring with IDD (Chambers et al., 2004;Dillenburger & McKerr, 2011;Knox & Bigby, 2007;Leonard et al., 2016;Morningstar et al., 1995). Indeed, studies which included parent perspectives (Chambers et al., 2004;Dillenburger & McKerr, 2011;Knox & Bigby, 2007) and the perspectives of individuals with IDD (Morningstar et al., 1995) found that individuals with IDD were not included in future planning. ...
... In addition, the literature also indicated that parents did not discuss future planning with their offspring with IDD (Chambers et al., 2004;Dillenburger & McKerr, 2011;Knox & Bigby, 2007;Leonard et al., 2016;Morningstar et al., 1995). Indeed, studies which included parent perspectives (Chambers et al., 2004;Dillenburger & McKerr, 2011;Knox & Bigby, 2007) and the perspectives of individuals with IDD (Morningstar et al., 1995) found that individuals with IDD were not included in future planning. Notably, in some circumstances, individuals with IDD or siblings may not want to engage in future planning (Burke et al., 2018). ...
Considering individuals with intellectual and developmental disabilities (IDD) are having longer lives and outliving their parents, future planning has emerged as one of the most important topics in the IDD field. Without future planning, individuals with IDD and their families may be at greater risk for negative outcomes such as inappropriate living conditions of individuals with IDD (e.g., institutions) and greater anxiety for families. Thus, it is important to examine future planning for individuals with IDD. The purpose of this review was to synthesize the literature about future planning among families of individuals with IDD. Specifically, the purpose was to summarize the literature with respect to: existing future plans, barriers to future planning, benefits of future planning, and correlates of future planning. A systematic literature review was conducted about future planning among families of individuals with IDD. In total, 43 studies were identified. Results indicated that few families have conducted future planning for individuals with IDD. Further, family caregivers (e.g., siblings and parents) reported different barriers. However, conducting future planning benefitted all family members including individuals with IDD. It is necessary to conduct future planning with all family members, including individuals with IDD. Further, it is critical to include individuals with IDD in research about planning. Implications for future research, policy, and practice are discussed.
... Prosser and Moss, 1996;Walker and Walker, 1998). Similarly, Dillenburger and McKerr (2011) interviewed 29 older parents/ caregivers in Northern Ireland, aged 47-84 years old, and reported a severe lack of support, respite care and future planning, all of which can lead to increased levels of caregiver stress. While these studies, and others, report negative physical and/or mental health associations with caring for a child with intellectual disability(ies) into older age (e.g. ...
... The caregiving role is often viewed as "demanding" and "stressful", however, it is worth noting that not all carers perceive themselves as being "stressed" and can frequently perceive their role as satisfying and rewarding (e.g. Cairns et al., 2014;Dillenburger and McKerr, 2011;Grant et al., 1998;Hill and Rose, 2009;Rowbotham et al., 2011;Yoong and Koritsas, 2012). As such, carers often choose to continue caring into older age, especially when instances of mutual caring exist. ...
... Prosser and Moss, 1996;Walker and Walker, 1998). Similarly, Dillenburger and McKerr (2011) interviewed 29 older parents/ caregivers in Northern Ireland, aged 47-84 years old, and reported a severe lack of support, respite care and future planning, all of which can lead to increased levels of caregiver stress. While these studies, and others, report negative physical and/or mental health associations with caring for a child with intellectual disability(ies) into older age (e.g. ...
... The caregiving role is often viewed as "demanding" and "stressful", however, it is worth noting that not all carers perceive themselves as being "stressed" and can frequently perceive their role as satisfying and rewarding (e.g. Cairns et al., 2014;Dillenburger and McKerr, 2011;Grant et al., 1998;Hill and Rose, 2009;Rowbotham et al., 2011;Yoong and Koritsas, 2012). As such, carers often choose to continue caring into older age, especially when instances of mutual caring exist. ...
... Prosser and Moss, 1996;Walker and Walker, 1998). Similarly, Dillenburger and McKerr (2011) interviewed 29 older parents/ caregivers in Northern Ireland, aged 47-84 years old, and reported a severe lack of support, respite care and future planning, all of which can lead to increased levels of caregiver stress. While these studies, and others, report negative physical and/or mental health associations with caring for a child with intellectual disability(ies) into older age (e.g. ...
... The caregiving role is often viewed as "demanding" and "stressful", however, it is worth noting that not all carers perceive themselves as being "stressed" and can frequently perceive their role as satisfying and rewarding (e.g. Cairns et al., 2014;Dillenburger and McKerr, 2011;Grant et al., 1998;Hill and Rose, 2009;Rowbotham et al., 2011;Yoong and Koritsas, 2012). As such, carers often choose to continue caring into older age, especially when instances of mutual caring exist. ...
... Prosser and Moss, 1996;Walker and Walker, 1998). Similarly, Dillenburger and McKerr (2011) interviewed 29 older parents/ caregivers in Northern Ireland, aged 47-84 years old, and reported a severe lack of support, respite care and future planning, all of which can lead to increased levels of caregiver stress. While these studies, and others, report negative physical and/or mental health associations with caring for a child with intellectual disability(ies) into older age (e.g. ...
... The caregiving role is often viewed as "demanding" and "stressful", however, it is worth noting that not all carers perceive themselves as being "stressed" and can frequently perceive their role as satisfying and rewarding (e.g. Cairns et al., 2014;Dillenburger and McKerr, 2011;Grant et al., 1998;Hill and Rose, 2009;Rowbotham et al., 2011;Yoong and Koritsas, 2012). As such, carers often choose to continue caring into older age, especially when instances of mutual caring exist. ...
Purpose
Individuals with intellectual disability(ies) are living longer contributing to an overall increase in the average age of caregivers. The purpose of this paper is to review the literature on the physical, social and psychological needs of ageing carers of individuals with intellectual disability(ies) in the UK.
Design/methodology/approach
A scoping review framework was used to identify literature from eleven databases, the grey literature and the references lists of relevant studies. Only primary research studies that discussed the needs of non-professional carers, aged 65+ years old, of individuals with intellectual disability(ies) in the UK were included. No date restrictions were applied. Thematic analysis was used to narratively synthesise findings.
Findings
Six studies were included. Five key themes were identified: Living with fear, lack of information, rebuilding trust, proactive professional involvement and being ignored. Housing and support information is not communicated well to carers. Professionals require more training on carer needs and trust must be rebuilt between carers and professionals. Proactive approaches would help identify carer needs, reduce marginalisation, help carers feel heard and reduce the risk of care crisis. Greater recognition of mutual caring relationships is needed.
Originality/value
This review highlighted the needs of older caregivers for individuals with intellectual disability(ies) as well as the need for more high-quality research in this field. The information presented in this review may be considered by primary care providers and funding bodies when planning future support for this growing population of carers.
... Although concerns of the parents often focus on financial needs or other physical aspects of caretaking, the potential loss of the emotional relationship can be worrisome to parents who may be socially isolated (Dillenburger & McKerr, 2011). Caregiving for an adult child with ASD differs from caregiving for an aging spouse or other relative (Baumbusch, Mayer, Phinney, & Baumbusch, 2017). ...
... Caregiving for an adult child with ASD differs from caregiving for an aging spouse or other relative (Baumbusch, Mayer, Phinney, & Baumbusch, 2017). Parents may feel that other relatives could lack the same emotional investment in providing care as they do or may be burdened by caregiving tasks which may result in avoiding future planning for their adult child with ASD (Dillenburger & McKerr, 2011). ...
The aging process for parental caregivers of adult children with autism spectrum disorder (ASD) can be complicated and filled with worry about the unknown. This qualitative phenomenological study examined concerns and barriers of these parents that could inhibit their future planning. One-on-one interviews were conducted with 51 parents of adult children with ASD. Parents were older than age 50 years and their children were older than age 18 years. During the interview process, parents discussed future-oriented concerns related to their adult child’s care. Based on results of the content analysis from interview responses, four themes emerged from interview responses related to parents’ fears for the future, including difficulty identifying caregiving support for the future, barriers to making plans/decisions, fear of the unknown, and feeling the need to make plans and decisions now. Although many parents understood that plans for the future were needed, they often experienced difficulty in initiating the process. Some of their concerns caused stress that further inhibited their planning. To assist parents in planning, social workers need to be educated regarding parents’ unique needs to help them work through the planning, separate planning into manageable pieces, and provide support at each step of the process.
... Bianco et al. (2009) found that parents of children with developmental disabilities expressed concern and felt apprehensive when attempting to access adult support services. In addition to this, 72% of caregivers of adults with disabilities, including autism, report that they have not made any long-term plans for the future (Dillenburger and McKerr 2011). ...
... Least concerning "Other" 3.4 Table 4 Most frequent worries Worry Frequency Percentage "I worry that their needs won't be met" 92 77% worry at least weekly "I worry that they won't have a good quality of life" 91 76% worry at least weekly "I worry that they will be lonely" 88 73% worry at least weekly "I worry that they won't be happy" 86 72% worry at least weekly "I worry that they won't be able to communicate their needs" 85 72% worry at least weekly family member would provide support in the future, whereas 36% "didn't know" who would care for their relative in the future. Dillenburger and McKerr (2011) reported that 72% of carers in their sample had not made any longterm plans for the future. Concerns were also expressed relating to the quality of care that autistic adults may receive in the future and whether support in the future could match up to the care that families had been able to provide over a lifetime of understanding their relatives' specific needs and capabilities (Krauss et al. 2005). ...
Very little is known about autism and adulthood. Family members are often the primary support for autistic adults and frequently express concerns about what the future will hold and what support will be available for their relative. 120 family members of autistic adults completed an online survey exploring concerns about the future for their relative. The most endorsed concerns were “their needs won’t be met” (77% worried weekly), “whether they will be happy” (72% worried weekly) and “who will care for them” (58% worried weekly). The results highlight the importance of implementing structured and timely support through collaboration with governmental policy, local commissioning and communication with charities to help prepare family members and their autistic relative for the future.
... The sustainability of such family caregiving for older people with an intellectual disability has received growing attention in recent decades (Dew, Llewellyn, & Baladin, 2004;Dillenburger & McKerr, 2012;Freedman, Krauss, & Seltzer, 1997;Heller & Factor, 1993; This study was funded by the National Disability Authority, Ireland. Ryan, Taggart, Truesdale-Kennedy, & Slevin, 2014;Seltzer, Floyd, Song, Greenberg, & Hong, 2011;Taggart, Truesdale-Kennedy, Ryan, & McConkey, 2012), not least because the average life expectancy of people with an intellectual disability has increased in all Western Societies during the last century (Carter & Jancar, 1983); however, this remains less than that of the general population, decreasing in line with severity of intellectual disability and associated health complications (Patja, Iivanainen, Vesala, Oksanen, & Ruoppila, 2000). ...
... The reasons for this limited engagement with future care planning are complex and multifactorial (Bowey & McGlaughlin, 2007;Gilbert, Lankshear, & Petersen, 2008;Ryan et al., 2014;Taggart et al., 2012), but one of the strongest reasons cited, particularly amongst parent carers, is their expectation or "hope" that a sibling without disabilities would eventually assume the carer role (Dillenburger & McKerr, 2012;Ryan et al., 2014). . Prior studies have suggested that between a third and a half of siblings share their parents' expectation that they will support their sibling with an intellectual disability in the future (Davys, Mitchell, & Haigh, 2014;Heller & Arnold, 2010) and, perhaps in preparation for this day they progressively increase participation in the various caring activities necessary to support their sibling with an intellectual disability (Bigby, Webber, & Bowers, 2015). ...
Background:
Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, deinstitutionalization and policy prioritization of the family as the principal care provider, presents new challenges to care sustainability.
Method:
A qualitative study design was employed, entailing focus groups and semistructured interviews, with purposive sampling via the parent study population of the Intellectual Disability Supplement to The Irish Longitudinal Database on Ageing.
Results:
The traditional sociodemographic facilitators of family caregiving are in rapid decline. Families perceived limited support from services and limited future care options. Few future care plans have been formulated. A strong possibility exists of placement of older family members with an intellectual disability in out-of-family home care.
Conclusion:
To anticipate and provide for quality care supports, there is a need to establish proactive initiatives, for both people with an intellectual disability and their families', to facilitate the early formation of long-term care plans.
... With regards to the evaluation of the strength of the studies, it is important to remember that this kind of research is conducted in residential settings were the strict criteria, such as randomisation and blinding commonly are impossible to achieve (Keenan and Dillenburger 2011). Other criteria, such as detailed description of diagnostic processes, also often are not available in applied studies of adults in residential care, given that most of these residents would have been diagnosed as children and entered residential care as adults (Dillenburger and McKerr 2011). As such, their exact diagnostic history often remains unknown. ...
Positive Behaviour Support is an applied behaviour analytic system of support that is utilised in schools and in residential care settings for children and adults with disabilities who engage in challenging behaviour. Implementation fidelity depends on appropriate staff training and organisational behaviour management. A systematic literature review is reported that evaluated the evidence in relation to change in staff and service user behaviour and the impact of organisational behaviour management systems on effectiveness, generalization, and maintenance of these outcomes. Nine relevant articles were identified and analysed according to (1) the demographics of staff and residents and methods of staff training; (2) organisational behaviour management systems; (3) staff and service-user behavioural outcome measures; and (4) the methodological quality of the study. A combination of antecedent and consequence-based training strategies was used in the studies. Eight studies reported on the organisational behaviour management systems that were used, with five reporting on the responsibility of trainees to transfer their training to their untrained teams (pyramidal training). Although the studies reported on staff behaviour change following the training, only one of the studies reported significant increases of service user quality of life as a result of staff training and only two studies provided adequate methodological strength.
... The birth of a child with Developmental Disabilities (DD) is considered to be a major life trajectory, which challenges the parents' life world [1][2][3], and has a profound effect on their wellbeing [4], and on the utilization of social and professional opportunities [5,6]. In this context, changes in parents' personal goals may be necessary in order to provide for their child's care [7][8][9][10]. The aim of the present study is to explore how parents retrospectively experience and interpret self-actualization, which is defined as "the desire to become increasingly what one is, to become everything that one is capable of becoming" [11, p. 382] in the context of long-term caregiving to a child with developmental disability (CWDD). ...
Recently, the number of adults with Developmental Disabilities (DD) who live with their parents has increased. This study aims to explore how parents report retrospectively and interpret their experience in the context of self-actualization in the long-term care of a child with a developmental disability. Four forms of parents’ experiences emerged from the analysis: “This child is my whole world”–Total devotion; “I Can Do Both”—Actualizing personal and familial goals as well as caregiving issues; “It’s a mission, it’s a calling, it’s a full-time job”–Self-actualization through caregiving; and "Disability will not stop me"—Emphasizing self-actualization. While prior studies have created a distinct separation between caregiving and self-actualization, the current study focuses on the complex dynamics of lifelong parental caregiving for a child with DD, illustrating the parents’ ways of actualizing their life goals in the context of caregiving over the years.
... The average age of a woman/person giving birth in the United States at first live birth is 26 years (Mathews, 2016) while the average age of the caregiver of an adult is 49.2 years, with about one-third older than age 65 (Family Caregiver Alliance, n.d.). Compared to those who are younger, older caregivers may require different supports in their care provision (e.g., support for their own possibly declining health, support for stress and sadness in terms of uncertainty about the future and the possibility of losing a loved one, and financial and social stress (Dillenburger & McKerr, 2010). ...
... When faced with providing care to an additional care recipient(s), caregiving demands increase exponentially (Marsack-Topolewski, 2021;Perkins, 2011). The lifelong nature of caregiving requires tremendous time and sacrifice by caregivers who lack adequate support from formal service providers (Dillenburger & McKerr, 2011;Perkins, 2011). ...
Many aging parents care for adult children with autism spectrum disorder (ASD) and an additional loved one. This exploratory study compared differences among compound 1 (caring for an additional family member), compound 2 (caring for a typically developing minor child), and noncompound (solely caring for an adult child with ASD) caregivers on perceptions of the degree of support that care recipients need to perform specific types activities of daily living (ADL) that care recipients need assistance to complete. Each caregiver cared for at least one adult child with ASD. Results from a web-based survey completed by 320 aging caregivers were examined using Kruskal-Wallis ANOVA tests for independent samples. Compound 1 and noncompound caregivers were more likely to be involved in assisting their adult children with some ADLs when compared with compound 2 caregivers. Findings provide insight into the realities of caregivers with regard to ADL needs of their adult children.
... The issue of breakdown in support is compounded by a reluctance on the part of family carers to plan for transition, leaving older people with learning disabilities at risk of inappropriate relocation to more intensive supported care [8,14,15]. The majority of family carers wish their adult family member to reside in the family home [16][17][18], as do a majority of adults with a learning disability PWLD [19][20][21]. ...
Background
There are over 1 million adults with a learning disability in the UK, of whom approximately 20% displaying behaviours that challenge others. Two thirds of people with learning disabilities live in the family home. As they and their family carers age, both are likely to face particular difficulties and stresses, but there is little understanding of their experiences and needs. To address this evidence gap, our main objective is to undertake two rapid scoping reviews that will collectively focus on the health and social care needs, experiences, service interventions and resources of older people with learning disabilities and behaviours that challenge others, and their family carers. Both reviews will focus on issues relating to forward planning and transitions to different care contexts. The study is part of a research project funded by the National Institute for Health Research No.129491.
Methods
We propose to address the need for evidence via two rapid scoping reviews. We will include published and unpublished (grey) literature, encompassing empirical research, policy and practice guidance and lay resources to support decision-making. We will search multiple electronic databases, hand search references lists, and use expert guidance to identify potential evidence. The following databases were used for research and grey literature: CINAHL; Healthcare Management Information Consortium (HMIC); NHS Evidence; Scopus; Turning Evidence Into Practice (TRIP); Web of Science (WoS); Google (first 5 pages); and Google Scholar (first 5 pages). For RR2, additional intended databases are the Carer Research Knowledge Exchange Network (CAREN) and Social Care Institute for Excellence (SCIE). Two reviewers will independently screen all citations and full-text articles for inclusion. One reviewer will extract data, with an independent review undertaken by the research team. Critical appraisal will depend on the nature of included evidence. Narrative synthesis will be collaboratively developed, with descriptive information presented in tables summarising study characteristics and thematic analysis of findings presented in the main text. Dissemination will be through journal publication, conference presentations and written short-form, easy-read versions of articles and audio-video clips for lay audiences.
Discussion
We will consider the strengths and limitations of our reviews, considering their impact on findings. We will summarise the main findings and provide an interpretation linked to the review questions and objectives. We will consider the implications of our findings for policy and practice, as well as future research addressing the support of older people with learning difficulties and behaviours that challenge others, and their family carers, in the context of transition to different care contexts in the UK.
The protocol has been registered as Vseteckova, J., Jordan, J., Tilley, E., Larkin, M., Ryan, S., and Wallace, L. (2021, December 4). Transitions for older people with learning disabilities and behaviours that challenge others, and their family carers: a merged protocol for two rapid scoping reviews of evidence. Retrieved from osf.io/jzrn9.
... Mothering children with intellectual disabilities (ID) is a topic that has been widely discussed in the research literature, which indicates a wide range of research in this area, including the experiences of mothers right after their child's birth and how information about the fact that the child might have an intellectual disability is delivered and received (Harwood, McLean, & Durkin, 2007;Hassall, Rose, & McDonald, 2005); the stages of adjustment to the role of a mother of a child with intellectual disability (Murkoff & Mazel, 2014;Shapiro, Kilburn, & Hardin, 2014); experiences pertaining to the process of diagnosing their child's intellectual disability (Brown, Goodman, & Kupper, 2014); lifestyle changes and decisions about the future as a function of the birth of their child (Duncan, Edwards, Reynolds, & Alldred, 2004); the perceptions and emotions of mothers of children with intellectual disability in relation to shame, grief, fatigue, or self-isolation (Dillenburger & McKerr, 2011;Green, 2007); the reactions of mothers to their child's disability (Goodley & Tregaskis, 2006); sense of a lack of meaning in life, sense of defeat (Griffin, 2019); mothers' difficulties in coping with their own mental health, including experiences of and responses to depression (Dave et al., 2014), fear (Bujnowska, Rodríguez, García, Débora Areces, & Marsh, 2019), stress (Woodman, Mawdsley, & Hauser-Cram, 2015); high caregiver demands (Raina et al., 2004), stigma (Ngo, Shin, Nhan, & Yang, 2015); difficulties in family life organization from a financial perspective (Oti-Boad, 2017); marital relationship (Parish, Rose, Grinstein-Weiss, Richman, & Andrews, 2008), or finding positive aspects of motherhood (Gupta & Singhal, 2014). This literature suggests that the circumstances of these mothers are often exceedingly difficult, frequently not fully understood, and must be better understood (Bernard & Goupil, 2012;Budak, Küçük, & Civelek, 2018). ...
Introduction
Little is known about the experiences of mothers who care for adult children with profound intellectual disabilities (ID). The aim of this study was to explore these experiences from their perspective. Parenting adult children with profound ID presents a type of maternal experience that differs from that commonly experienced by other mothers.
Methods
Researchers conducted narrative interviews with 34 Polish mothers with adult children with profound ID. A narrative interview was used, a process that resembles an in-depth, free-flow conversation. Through follow-up questions, researchers encouraged the interviewees to share stories of their personal experiences of motherhood. The information was shared during the participant interviews using analytical methods, based on theoretical and methodological concepts developed within the biographical sociology framework outlined by Fritz Schütze. The respondents were asked to share their thoughts about their experiences as mothers from past, present, and future perspectives.
Implications
Gaining a better understanding of and uncovering details about the motherhood experiences of women with adult children with profound disabilities are important so as to better understand ways to better support mothers in such situations. It is especially important to know about the ways in which these women perceive their experiences and to understand the social context that impacts their experiences and perceptions.
... The other benefits of caring for children with ASD include positive personality changes in family members such as becoming more patient, less judgmental, and gaining resiliency using problem-focused coping strategies [7,8]. Despite the joy of parenting [9], providing daily care for adult children with ASD can be overwhelming and constant, contributing to caregiver burden [10]. ...
Background
Despite the joy of parenting, the burden of daily caregiving for children with autism spectrum disorders (ASD) can be overwhelming and constant. Parents can expect to provide enduring care for their children with ASD. Given that the majority of individuals with autism spectrum disorders (ASD) remain in their family homes well into adulthood, often the need for assistance with activities of daily living (ADLs) is placed on parents. Providing ongoing support to adult children who have difficulty with completing ADLs can increase parental caregiving demands. Therefore, the purpose of this study was to examine the relationship between the ability of adults with ASD to perform ADLs with parental perceptions of caregiver burden.
Methods
Quantitative analysis of cross-sectional multi-state data gathered electronically using Qualtrics from 320 aging parents of adults with ASD was conducted. Regression models were fit to examine the association of ADL challenges with total caregiver burden and its four domains (emotional, financial, time dependence, and developmental).
Results
Parental perceptions of caregiver burden decreased, particularly time dependence and developmental burden, when adult children were less dependent in ADLs, even after adjusting for parental health and behavioral challenges.
Conclusions
Findings support the need for family-centered interventions to improve the capacity of adults with ASD to perform ADLs independently.
... Indeed, parents report feelings of isolation (Vasilopoulou & Nisbet, 2016) and psychological distress (Crnic, Neece, McIntyre, Blacher, & Baker, 2017;Patton, Emerson, Emerson, & Lennox, 2018). As their offspring age, parents continuously encounter new challenges, resulting in ongoing stress (Dillenburger & McKerr, 2011). This long-term stress, paired with parents' own life changes and aging, can reduce their coping capacity and result in diminished resiliency to other stressors (Pearlin, Menaghan, Lieberman, & Mullan, 1981), decreased physical health (Gallagher, Phillips, Drayson, & Carroll, 2009;Miodrag & Hodapp, 2011), fatigue (Lach et al., 2009), and increased risk of depression (Brehaut et al., 2004). ...
Like all people, adults with intellectual and developmental disabilities (IDD) use a variety of supports to meet their daily needs. Due to diminished funding for government services, most adults with IDD are left with unmet needs and, thus, turn to informal supports to meet these needs. Informal supports refer to unpaid care provided by people within the individual's social network. Throughout this chapter, we review the literature, discussing the various types of informal support and the people who provide such support. Person-centered planning is highlighted as a way to promote self-determination, grow social networks, and secure individualized supports. Finally, we present current informal support initiatives for individuals with IDD and their families. Along the way, we underline the significance of informal supports in meeting the daily needs of this population, the role of the family in providing and coordinating such supports, the need to increase the size of social networks for adults with IDD, and the strengths-based lens that must be taken to provide individualized supports. We conclude by providing recommendations to increase and sustain informal supports.
... De même, les soins prodigués aux enfants sont tels que les parents en arrivent à percevoir certains besoins plus personnels ou leurs projets conjugaux, comme des luxes du moment présent ou des aspirations à concrétiser dans une vie éventuellement plus disposée à cet égard. Il importe également de souligner que ce choix prioritaire de la santé peut aussi être associé à la promotion actuelle des saines habitudes de vie (alimentation, activité physique) (Adams, 2019) ou à la prise de conscience qu'ils doivent demeurer en santé à long terme en raison de l'assistance requise par leur enfant (Dillenburger & McKerr, 2011;Jennings, 1987). ...
... Accessing appropriate services for individuals with ASD can be challenging (Blinded for Review, 2019; Taylor & Henninger, 2015;Vohra et al., 2014), and many parents have few formal support services to aid in caring for their adult children with ASD when they age out of public school services (Shattuck et al., 2011). Because of the diminishment of services, parents often face multiple challenges, such as inadequate respite care options, lack of structured activities, or limited opportunities for employment for young adults (Dillenburger & McKerr, 2011;Vohra et al., 2014). ...
The predominance of literature on autism spectrum disorder (ASD) focuses on the diagnosis and needs of young children with ASD and their parental caregivers. Research that compares adults with ASD who were in extended public school programs and those who had either aged out of the programs or were not attending these programs and their service needs is lacking. The purpose of this study was to examine differences in caregivers’ reported use of formal and informal social support services for adults with ASD in public educational systems and those who are not receiving services from the educational system. A national sample of 320 parents (age 50+) of an adult child (18+) diagnosed with ASD completed a web-based survey. Results of the study indicated that parental caregivers and adults with ASD were not accessing support services, especially after leaving or aging out of public schools. Social work practitioners and other healthcare professionals can play an important role in addressing the needs of parents and individuals with ASD as they transition into adulthood and age across the lifespan. Future research should investigate the need for services for adults with disabilities, specifically ASD.
... They also face concerns about the welfare of their children once they are unable to care for them (Dillenburger and McKerr 2010). Previously people with learning disabilities often predeceased their parents (Taggart et al., 2012), however older parent caring is an ever increasing phenomenon. ...
Accessible summary
• There are a large number of adults with learning disabilities who live with and are cared for by their parents.
• There is a need for interventions to support older carers with their caring role and to plan for a time when they can no longer continue caring.
• This research looked at a local support service in England that aimed to support carers over 55 who had an adult child with a learning disability living at home.
• Twelve carers were interviewed individually.
• The study highlights the unmet needs of older family carers and shows the value of support from a carer perspective.
Abstract
Background
There are a significant number of adults with a learning disability who live with and are cared for by their parents. There is a pressing need for interventions to support older parent carers with their role and to plan for a time when they can no longer continue caring. This article reports on the experiences of older parent carers who have been in receipt of an intervention to support future planning, in a rural part of England, delivered to older carers of their adult children with learning disabilities.
Methods
Semi‐structured carer interviews (n = 12) were conducted and analysed thematically.
Results
Four themes were identified (a) emotional needs of carer, (b) future planning, (c) accessing other services and resources and (d) links to adult care services. Carers welcomed the flexibility of the intervention and its focus on support for them, relieving their sense of isolation.
Conclusions
The research highlights the unmet needs of older family carers and shows the value of tailored support from a carer perspective. The findings have implications for national social care provision delivered to carers of adult children with learning disabilities in rural areas.
... Researchers may also have been concerned about whether participants with intellectual disabilities are able to give informed consent (Iacono, 2006) to a form of research which may have more complex ethical implications (e.g., direct, but anonymized quotations will appear in the final report). Much research which ostensibly explores ROSE Et al. the experiences of people with intellectual disabilities has relied on proxy perspectives (e.g., from carers or staff; Dillenburger & McKerr 2011;Hatton & Emerson, 2009). Gradually, however, there has been a constructive turn towards adaption, so that methods of recruitment, consent-taking, data collection and so on, are better able to involve people with intellectual disabilities in meaningful qualitative research. ...
Background
This paper examines the appropriateness of using interpretative phenomenological analysis (IPA) in research with people who have intellectual disabilities, focussing on quality.
Methods
We conducted a systematic search to identify published studies. We assessed the quality of the studies using a bespoke framework, adapted from previous reviews, and articles on indicators of “good” IPA work.
Results
Twenty‐eight papers were reviewed. The studies were of varying quality: 6 (22%) papers were rated as “good” quality; 16 (57%) were “acceptable”, and 6 (21%) were “poor.” This ratio was comparable to that found in assessments of IPA papers in other domains, suggesting that issues of quality reflect researcher competence, rather than challenges with the population.
Conclusions
IPA can be an appropriate methodology to use with people with intellectual disabilities. We encourage researchers to develop more detailed analyses, to provide more transparency about their sampling strategies, and more detail of the characteristics of their samples.
... Following a qualitative family research design, an "interpretive phenomenological analysis" was used (Smith, Flowers, & Larkin, 2009). This method is highly compatible for studying the psychology of health and illness, and is widely used in disability studies (Cassidy, Reynolds, Naylor, & Souza, 2011;Dillenburger & McKerr, 2011). It is oriented toward exploring and understanding the experience of a particular phenomenon, for example, experiences of siblinghood in families coping with the lifelong disability of one of its members. ...
The research explores sibling relationships, and the ways in which they are shaped over the life course by family members, in families with a lifelong disability. In-depth, semistructured interviews were conducted with 15 family units including a parent, a sibling, and an adult sibling with a disability. The content analysis revealed five sibling relationship patterns: (a) “Not a child, but a parent caretaker”—the parent–surrogate sibling; (b) “We somehow grew apart”—the estranged sibling; (c) “It is important for me to maintain some kind of distance”—the bystander sibling; (d) “When there’s something they want to tell him, they always send me”—the mediator sibling; and (e) “I love him to death”—the friend sibling. These patterns of adult sibling relationships are discussed in relation to family dynamics, values, and legacies; recommendations for practice and research are made.
... Future planning has been studied extensively in the field of intellectual disabilities and ageing, highlighting its significance (e.g., Dillenburger & McKerr, 2010;Griffiths & Unger, 1994;Heller & Caldwell, 2006;Heller & Factor, 2008). This literature underscores important aspects of the process of future planning, such as family member communication that occurs early in adulthood (Griffiths & Unger, 1994), access to support networks (Heller & Kramer, 2009), and availability of supports and services to guide families during this process (Heller & Factor, 1993). ...
... With cognisance of the persistence of behaviours that challenge when brought upon by the abovementioned psychiatric and neurobiological aetiologies, many ageing parents are, furthermore, left with the responsibility of care, and homeliving could be extended for decades after the child has reached young adulthood (Dillenburger & McKerr, 2010). Parents may experience deep-rooted feelings of despair, fear, hopelessness and helplessness, in particular when the child's behaviour is characterised by severe physical aggression or self-injury, or when prolonged caregiving is superimposed on persistent expressions of behaviours that challenge. ...
A significant minority of parents of children with learning and developmental disability experience elevated levels of parental stress, particularly when their children present with behaviours that challenge. A small but influential number of psychoanalytic authors have made significant contributions to the learning disability field of research, however, the psychological distress of parents whose children have behaviours that challenge has received scant attention. This paper posits that distressed parents of children with learning and developmental disability and behaviours that challenge often make use of primary defences, which are linked with their children’s behaviour, albeit in a reciprocal rather than causal manner.
... Disabilities (IDD) can be challenging (Davis & Carter, 2008) while at the same time, have positive effects for parents and other family members (Hastings, 2016). The stressors likely increase as individuals with IDD enter adulthood, when parents are faced with unique difficulties (Dillenburger & McKerr, 2011). Pearlin's "wear and tear" hypothesis suggests that long term exposure to stress can deplete coping capacity of caregivers and can result in decreased resiliency to stressors (Pearlin, Menaghan, Lieberman, & Mullan, 1981). ...
Background:
Parenting an individual with intellectual and developmental disabilities (IDD) can be challenging, particularly during adulthood. It is important to better understand ways of supporting families as individuals with IDD age. Self-compassion is a potential internal coping resource for parents, and is strongly linked to positive mental health outcomes, though research has yet to examine it in parents of adults with IDD.
Method:
The current study examines the association between self-compassion and measures of well-being for 56 parents of adults with IDD.
Results:
Greater self-compassion was related to lower levels of stress and depression, even after accounting for other known stressors, such as economic disadvantage, having a child with an Autism Spectrum Disorder diagnosis, and high parent burden.
Conclusions:
Self-compassion may offer resiliency against these parenting challenges.
... Bitsika and Sharpley (2004) report two-thirds of parents of autistic children in their sample were clinically depressed, further reinforcing the mental health needs of family members of autistic individuals. Dillenburger and McKerr (2011) explored long-term care and support available for parents and caregivers of adults with intellectual or developmental disabilities and found a gap in services and lack of future planning, which can cause increased stress for caregivers. Uncertainty about the future is a concern for many family members of autistic adults. ...
Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer’s wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer.
... The issue of care for adults with intellectual disabilities is not new, and historically it was handled by parents and families in both developing and developed countries (Oh and Lee, 2009). Often the care of an intellectually disabled person fell to the mother or other female family members which can be a highly overwhelming experience (Chou et al., 2011;Dillenburger and McKerr, 2011;Singh et al., 2014). When a child with intellectual disability becomes an adult, parents develop greater concern for independent living, sexuality, marriage, vocation and social security (Peshawaria et al., 1995;Verma and Kishore, 2009). ...
The longevity of people with intellectual disabilities is increasing in developing nations. However, developing nations lack a proper system of care for aging persons with intellectual disabilities. Until now the care has been provided by parents and relatives in the home environment in developing countries, but this scenario is also changing; therefore, there is a strong need to explore a plan of care for this population which is also feasible and replicable. The National Trust is an autonomous body of the Government of India which has developed a comprehensive plan of care for adults with intellectual disabilities. In this article, the National Trust is discussed using a socioecological model. The replicability and suitability of this model for other developing countries are discussed.
... [75] It is important, therefore, that careful planning, involving the person with autism and their family, takes place well in advance of a change to the family situation. [76] This will help to address the concerns of both the autistic person and their carers. Emergency plans, detailing what support will be put in place for someone if their care arrangements break down, can alleviate anxiety, and lessen the likelihood of an emergency residential placement. ...
This update to the existing guide in October 2011 was funded by the Department of Health in 2016, the original author from the University of Sussex and SCIE updated the previous version, in light of many changes and developments in the field of Autism, in the last five years.
This guide helps people in the health and social care sector who work with adults with autism to increase their awareness, knowledge and understanding. Autism is a lifelong developmental disorder, referred to as a ‘spectrum condition’ since some people with autism have profound difficulties and require specialist support, while others live largely independent lives.
Autism: Improving access to social care for adults. Available from: https://www.researchgate.net/publication/316973246_Autism_Improving_access_to_social_care_for_adults [accessed May 25, 2017].
... Debido a que no se han encontrado estudios que analicen las diferentes facetas del mindfulness en estos cuidadores sería positivo explorarlas también en estudios cuantitativos. Vivir en el presente, pilar importante del mindfulness (Segal et al., 2010), fue otro factor cuya importancia fue especialmente mencionada por los familiares del estudio, aun siendo el futuro una de las grandes preocupaciones de este colectivo (Dillenburger y McKerr, 2011). ...
El apoyo a un familiar con discapacidad intelectual puede constituir una fuente importante de estrés. Este estudio explora los factores que contribuyen en el proceso de resiliencia de los familiares de personas con discapacidad intelectual españoles. Para ello se llevaron a cabo entrevistas en profundidad a 32 familiares cuidadores considerados «resilientes» por las asociaciones a las que pertenecen. Los resultados muestran como los familiares son capaces de utilizar diferentes recursos internos y externos para desarrollar resiliencia y adaptarse a la situación de cuidado. Los familiares describieron factores internos como la aceptación, el afrontamiento activo, la toma de perspectiva, el optimismo, la espiritualidad, la transformación en metas, tener una ocupación, el ocio, el mindfulness, vivir el presente y el autocuidado. También fueron mencionados factores externos como el apoyo formal e informal y la economía. Los resultados muestran como estos factores son dinámicos y pueden relacionarse entre ellos. Las implicaciones clínicas de este estudio son descritas.
Introduction/aims:
Most patients with Duchenne muscular dystrophy (DMD) in the US are diagnosed at about age 5 years. Some adolescents and young adults (AYAs) with DMD are now living into their fourth decade, yet AYAs and caregivers are frequently unprepared to address changes in goals of care due to disease progression. The hypothesis-generating research question was how AYAs with DMD and their caregivers understand the relationship between physical changes and the need to change goals of care.
Methods:
Grounded theory design using data from N = 30 semi-structured interviews (n = 13 AYA; n = 17 caregivers) from two sites.
Results:
AYAs with DMD frequently defer considering and/or reconsidering goals of care based on (1) delays in diagnosis; (2) gradual, rather than episodic, disease progression; and (3) orientation to living in the present. Desire for autonomy motivates advance care planning and end-of-life treatment preferences for some.
Discussion:
Routine inquiry into AYA and caregiver goals for living may normalize goals of care conversations, maximizing patients' ability to process information, reflect on preferences, and articulate wishes. Discussing present-day goals and abilities may invite conversation about future preferences. Framing conversations in terms of AYA autonomy may increase motivation to engage in such discussions. This article is protected by copyright. All rights reserved.
Future planning is a person-family-centered process that involves ongoing communication and an understanding of the person with a disability, their family, and the supports needed to have a meaningful quality of life. Individual characteristics, interpersonal relationships, family roles, service systems, policies, and societal factors can impact planning for the future. This chapter highlights the importance of promoting future planning and how to support individuals with an intellectual and developmental disability (IDD) and their families. The chapter begins with an overview of the issues faced by a society that is aging followed by a review of research regarding planning domains, role of family members, relationships, and planning strategies. The chapter also uses four family stories to illustrate how a planning tool can be used to facilitate communication about their futures. Lastly, future planning is discussed using the ten dimensions of Carter’s (2016) belonging framework as well as how resilience can be enhanced through the future planning process. The chapter concludes with discussion questions, tools, and resources for individuals with IDD and their families which can support future planning.
Background
Although attention has been devoted to social supports provided by parents and siblings of adults with intellectual and developmental disabilities (IDD), much less is known about supports provided by the spouses of these siblings—the so-called siblings-in-law. This study examined the role of the sibling-in-law in the social support networks of their brother/sister-in-law with IDD and factors associated with providing greater amounts of tangible, informational and emotional support.
Method
Siblings-in-law of adults with IDD living predominately in the United States (N = 99) participated in a cross-sectional survey. Measures covered demographic and family background, perspectives towards having a brother/sister-in-law with IDD, supports provided and characteristics of the adult with IDD's social support network.
Results
Most siblings-in-law reported providing support to their brother/sister-in-law with IDD. Percentages of siblings-in-law providing support were similar to that of the spouse and the spouse's family in the area of emotional support and similar to percentages of paid professionals in tangible and informational supports. Across all three support types, the main predictor of increased sibling-in-law support levels was a decreased ability of the parents-in-law to care for their child with IDD. Other predictors (e.g. distance from brother/sister-in-law with IDD and disability ‘insider’ status) varied by support type.
Conclusions
Findings highlight the role of siblings-in-law in the social support networks of adults with IDD, with implications for policy and practice.
Background
Adults with intellectual and developmental disabilities and their families have high need for support services. This study assessed resource utilization among caregivers of intellectual and developmental disabilities and other conditions.
Methods
We assessed 366 caregivers of adults with intellectual and developmental disabilities, dementia or other conditions Regressions assessed group differences in number of agency contacts and frequency of service use. A secondary analysis assessed reasons for underutilization of services.
Results
Caregivers of individuals with dementia contacted twice as many agencies as other caregivers and were more likely to report using suggested services. Agency contact and service utilization were similar among caregivers of adults with intellectual and developmental disabilities compared to other caregivers. Caregivers of adults with intellectual and developmental indicated that suggested services were unavailable to them.
Conclusion
The findings of this study shed light on challenges with access to and utilization of support services.
Cultural context has a significant influence on family support and parenting for children living with disabilities and has been powerful in shaping treatment and service provision. For parents, a pervasive concern lies with planning for future care provision for their child, and here culture plays a role. This qualitative research explores how cultural context shapes the future care provision plans for Korean parents by examining similarities and differences of future care provision-planning between Korean migrant families in New Zealand and those living in Korea. Specifically, the article examines the influence of familism on planning for future care among Koreans.
Parental caregivers can expect to support their children with autism spectrum disorder (ASD) across the lifespan. Providing ongoing support for adult children with ASD who have difficulty performing activities of daily living (ADLs) independently can increase caregiver burden. This may be particularly challenging for compound caregivers (caring for at least one adult child with ASD and another care recipient). The present study investigated differences in relationships between caregiver burden and basic ADLs (BADLs) and instrumental ADLs (IADLs) between compound and noncompound caregivers. Using a nonexperimental correlational research design, 320 parental caregivers of adults with ASD completed a web-based survey. The quantitative analysis compared compound and noncompound caregivers on relationships between caregiver burden and ability to perform ADLs independently. Differences for caregiver burden, BADLs, and IADLs between compound and noncompound caregivers were statistically significant. However, comparison of correlations of caregiver burden and ADLs between the two groups was not significant. These findings provided support that caregiver burden was negatively impacted by the lack of independence in functional ability of their care recipients with ASD for both groups. Social workers and other professionals should offer relevant interventions, supports, and services that benefit compound and noncompound caregivers and their adult children with ASD.
An increasing concern of families caring for children living with disabilities is related to planning for their future care. This qualitative study explores how the country contexts shape the plans for future care provision of Korean parents in New Zealand and Korea. Data were collected using semi-structured interviews with parents ( n = 18) and professionals ( n = 18). The study revealed that there are differences and similarities regarding the social reality of future care planning among Koreans in different national contexts. Recommendations are made In support of future care planning process taking its place as a conventional phase of care provision for people living with disabilities.
Caregiving can be a lifelong responsibility for parents of individuals with autism spectrum disorder (ASD). This study examined coping strategies and barriers experienced by parents of adult children with ASD. The 51 parents who participated in this study were at least 50 years old and had an adult child (18+) with ASD. Semistructured, one-on-one interviews were conducted with parents to understand their experiences of having an adult child with ASD. Using a qualitative, phenomenological approach, thematic analysis revealed seven themes related to parents’ coping strategies or lack thereof. Themes discussed include faith/spirituality, physical activity/fitness, self-focused coping, work, acceptance, reliance on social support, and barriers to coping. Most parents discussed having at least one coping strategy, with some sharing multiple strategies.
Background
People with intellectual disabilities are living longer, with family homes and family caregivers increasingly identified as a key support to this ageing population of people with intellectual disabilities.
Method
This systematic review sets out existing evidence from empirically evaluated intervention studies of future care planning for adults with intellectual disability by family carers.
Results
This systematic review identified a scarcity of systematic approaches to future care planning for adults with intellectual disabilities and their family carers. However, evidence from the review suggests positive outcomes for families once they engage in a future planning process.
Conclusions
Contemporary social policy orientation, which emphasizes reliance on families to provide care, along with an ageing population of people with intellectual disabilities, and diminishing caring capacity within family networks, suggests an urgent need for a more expansive research base that evaluates approaches to supporting adults with intellectual disabilities and their family carers to plan for their futures.
The purpose of this phenomenological study was to investigate parents’ perceptions of service access for their adult children with autism spectrum disorder (ASD). Access includes accommodation, acceptability, availability, and affordability (4 As) of services. This study examined which of the 4 As presented the biggest challenges across multiple types of services needed. Fifty-one parents of adult children with ASD participated in semistructured interviews sharing perceptions of support services available for their adult children. Parents discussed eight types of services (case management, educational programs, employment and employment supports, physical/mental health care, housing, day program or respite care, social life and recreation, and transportation). Based on parent perceptions, services were inconsistently accessible, difficult to obtain, and inadequate. Trained social workers and health care professionals are needed to provide and coordinate services for adults with ASD.
Case:
Kevin is a 12-year-old boy with autism spectrum disorder, intellectual disability (nonverbal IQ scores in mid-40s), and attention-deficit/hyperactivity disorder who has been followed up by a developmental-behavioral pediatrician (DBP) and a child psychologist for medication and behavioral management since he was 4 years old. Kevin was placed in the care of his great-great-aunt shortly after he turned 2 years of age because of concerns of neglect. She is now his legal guardian.Kevin is predominately nonverbal but does use a few single words to make requests or label items. He attends a public school and receives full-time special education support. He has a personal care assistant (PCA) who provides in-home support 5 to 6 days/wk for 3 to 4 hours at a time. The PCA is working on toilet training, using a "clock-training" approach, and also takes Kevin outdoors to play or on short outings during her visits. In his free time, Kevin prefers to watch cooking shows on television.Over the past year, Kevin's behaviors have become more concerning. There have been several episodes of Kevin waking up during the early morning hours and going to the kitchen to "cook." After one of these episodes, his guardian was not aware that Kevin had woken up until the next morning when she found a concoction of corn starch, coffee grounds, cottage cheese, and powdered drink mix in the blender. Kevin had also woken up during the night and ventured out of the house into the back yard. His guardian had woken up immediately as the alarm system sounded when he opened the outer door from the house to the yard.A door alarm was added to Kevin's bedroom door so that his guardian would be alerted when he leaves his bedroom; however, the alarm is not used consistently because there are times when the alarm cannot be found at bedtime. Kevin's guardian was able to obtain a GPS device for him to wear on his shoe from the local police department. He wears this without resistance every day.Kevin's guardian is in her mid-70s, and she has had several health issues over the past 2 to 3 years. There are no other family members who are willing or able to care for Kevin if his guardian were no longer able to. The DBP and child psychologist have encouraged Kevin's guardian to explore long-term residential care options with the state agency that provides support for individuals with intellectual disabilities and with Kevin's insurance provider, but the guardian is very reluctant to do this. She fears that Kevin will be removed from her care or placed in a "home" where someone will "do bad things to him."What else would you recommend or actions would you take to support Kevin's guardian in ensuring Kevin's safety and planning for his future care?
Background:
Parents of children with disabilities have faced difficulties in looking after their children, be it socially, economically and financially. Parents in rural areas are mainly left with a huge burden, as there is a lack of services and support from both the state and non-governmental organisations. Parents in Sekhukhune district, a rural area in Limpopo province of South Africa, face challenges in raising their disabled children related to lack of resources and lack of services at their disposal.
Objectives:
This study focuses on the experiences and life circumstances faced by parents of children living with different types of disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province, South Africa.
Method:
The study consisted of 14 participants who are parents of children living with disabilities. An interview guide with a set of questions was utilised to gather data. Thematic analysis was used to analyse the data and themes that emerged were grouped together.
Results:
Themes that emerged from the data showed that most of the participants had varying understandings on the causes of disabilities to their children. The participants also were of the view that a 'cure' for disability was available medically, spiritually or through traditional African medicine. The study also brought the notion of absent fathers, as most men do not want to be associated with children who are disabled. Stigmatisation of the parents was also a theme that the study revealed. The parents are subjected to name labelling as they are viewed to be practising witchcraft or to be paying for their sins they committed.
Conclusion:
Parents of children with disabilities are in their own battle in raising their children. There is a lack of support structures available for parents of children living with disabilities. There is a lack of legislation available for protecting and promoting the rights of children with disabilities. The researchers concluded that raising a child with a disability is expensive, time-consuming and straining.
Accessible summary ·
Older family carers of an adult with an Intellectual disability were asked about how they sometimes feel when supporting another person. · Most carers felt a little stressed or strained. · Older carers felt less stressed than younger carers. · The value of supports that help carers was identified.
Abstract Background: People with intellectual disabilities are experiencing increased longevity, and in parallel, their family caregivers are also ageing. The literature identifies that these caregivers are at risk of burden.
The aim of this study was to measure the level of caregiver burden among older carers of adults with intellectual disabilities in an Irish sample and to analyse the effect of socio‐demographic factors upon experiences of caregiver burden.
Materials and Methods: Thirty caregivers completed a survey questionnaire. Data were collected based upon participants’ self‐reports of burden using the Zarit Burden Interview (ZBI) and a socio‐demographic questionnaire. Data were analysed using SPSS version 24.
Results: Over 57% of carers indicated a mild‐to‐moderate level of burden. Analysis indicated that younger caregivers experience significantly higher levels of burden, when compared to older caregivers.
Conclusions: This study contributes to our understanding of burden among an Irish population of older caregivers supporting an adult with an intellectual disability. It identified that carers do experience burden. The importance of proactive assessments and supports for these caregivers was revealed. This study highlights a lack of Irish research in this area and may pave the way for future research which could build upon its findings
The number of older parents ageing in tandem with their adult children with intellectual disability (ID) is increasing. This unique situation calls for greater research that investigates how older parents experience this extended care-giving role, including the extent to which they are engaging in futures planning. Participants were recruited via disability service providers in South Australia. Using the theoretical perspective of hermeneutic phenomenology to understand lived experiences, semi-structured in-depth interviews were carried out with older parents (N = 17, mean age 70 years). Six offspring were living in the family home while the remainder were in supported accommodation. Main themes to emerge from the data were: (a) perpetual parenting, (b) costs and rewards and (c) planning to plan. Parents were providing care across a range of areas, regardless of whether their offspring lived at home or in supported accommodation. While aware of the need to plan for the future, most did not have a firm plan in place. Parents are providing a high level of support to their adult children with ID regardless of whether they live in supported accommodation or the family home. While some have started to think about future care arrangements, most appear unclear over what the future holds.
Background: The increased longevity of individuals with intellectual disability means that ageing parents often play an extended caregiving role into late life. This systematic review evaluates qualitative evidence on futures planning among older parents whose adult children live either in the family home or out-of-home.
Method: Electronic databases were searched for studies published between 2000 and 2015. Studies that met the inclusion criteria were analysed using the McMaster Critical Review Form for Qualitative Studies.
Results: Of 14 articles reviewed, quality was mixed. Three over-arching themes emerged: (1) external barriers to planning involving reservations about available services; (2) internal barriers preventing parents from planning such as mutual dependency and sense of helplessness; and (3) existence of diverse “plans” and ways of managing the future.
Conclusions: Parents are aware of the need to make plans or at the very least have preferences for what they would like to occur. However, a range of external and internal factors pose as barriers to this process.
This study evaluated two community based interventions for parents of adults with autism spectrum disorder and other developmental disabilities. Parents in the mindfulness group reported significant reductions in psychological distress, while parents in the support and information group did not. Reduced levels of distress in the mindfulness group were maintained at 20 weeks follow-up. Mindfulness scores and mindful parenting scores and related constructs (e.g., self-compassion) did not differ between the two groups. Results suggest the psychological components of the mindfulness based group intervention were effective over and above the non-specific effects of group processes and informal support.
Sixty-seven widows whose husbands had been killed in the context of sectarian violence in Northern Ireland were assessed in relation to the cause of death, the quality of their marital relationship and the level of worry prior to the loss. Results reported here show that the violent cause of death led to a greater level of long-term psychological distress than other causes of death. Furthermore, widows who reported happiness regarding their marital relationship showed more signs of distress after the loss than those who reported less happiness. Widows who had not worried about their husband showed less signs of psychological distress after the loss than those who had worried. The interpretation of the findings is based on recent thinking in behaviour analysis.
Theories of bereavement abound. The endeavour to understand this complex process has moved from intra-psychic explanations and stage theories to cognitive rationalizations and, most recently, process orientated explorations of bereavement. What has been missing in most of the literature to date is a detailed analysis of the context within which bereavement behaviours occur. This paper outlines a contingency analysis that includes consideration for the context of Death itself, Individual factors of the bereaved, Social factors, and influences of Cultural norms and systems (D.I.S.C.). The paper concludes by proposing that a comprehensive D.I.S.C. analysis might lead to whole person evidence-based practice in helping those who are experiencing bereavement.
Foreword, Professor Newman, Association in Manhattan for Autistic Children. 1. Applied Behaviour Analysis: A Parents' Perspective, Barbara Hanna, Mary O'Cahan, Hillary Johnston and Laura McKay. 2. Applied Behaviour Analysis and Autism: The Therapy of Choice, Ken P. Kerr. 3. Functional Analysis, Ian Taylor. 4. The Story of Colin, Laura McKay, Mickey Keenan and Karola Dillenburger. 5. What do we Want to Teach our Children? Parents from the PEAT Group and Ken P. Kerr. 6. Conclusion and the Way Ahead, Mickey Keenan, Ken P. Kerr and Karola Dillenburger. References. Index.
Given different approaches to service delivery in Canada and the United States and the lack of data available regarding Canadian samples, this study focused on four areas: (a) the major concerns of 80 aging parents of adults with developmental disabilities living in Ontario; (b) their support needs and use; (c) differences in stress and service need and use according to gender, age and whether they lived in urban or rural communities; and (d) the psychological well-being of older parents in relation to stressors, resources and perceptions of stress. Major issues of concern raised by parents involved long- term planning for accommodation and ongoing emotional and social support, as well as the creation of opportunities for their sons and daughters to participate in activities . Significant differences in service needs and use were found for social and recreational activities, respite care, supported employment, day programs, residential placements, in home support, counselling and behaviour management services. The main reasons given for gaps between service need and use were long waiting lists and a lack of available and appropriate services. Parents reported fewer service needs for themselves than for their family members. Their major needs were for parent support groups and parent education. Predictors of depression in parents included maladaptive behaviour, adverse age-related changes and service use.
Due to the high incidence of disability amongst their contemporaries, older people are likely to be involved in informal caring relationships. Due to the limited nature of post-retirement incomes, such carers are also likely to be relatively poor. In spite of this, little attention has been given to the role of older carers of disabled people or to the influence of poverty upon this role. In an attempt to redress this neglect, this paper will explore the way in which the ageing process serves to exacerbate the demands upon such carers, not only due to the increased incidence of disability experienced by older people, but also due to their decreased access to material resources, which would help to alleviate these demands.
Often, life-changing decisions regarding the long-term care needs of frail older patients are taken at vulnerable times when they are ill or hospitalized. Consequently, patients may be placed inappropriately in institutional care where it is difficult to regain the skills or confidence needed to return home. This paper presents findings from an evaluation of a service that extends the period of decision making about patients needs by providing a rehabilitative package of care in the patient's own home. Participants comprised two groups; older people who received the rehabilitation service (n=56) and a comparator group of similar older people who received a care managed service (n=56). All participants completed a series of measures at three time-points. These measures included an assessment of functioning, a measure of quality of life and, a measure of service utilization. On discharge, rehabilitation clients experienced significant improvements relative to care-managed clients on all functional measures (FIM, P=.014; CDI, P=.001; EASY, P=.001); quality of life (P=.003); and, service utilization and cost (P=.001). In addition, carers of rehabilitation service users reported significantly less stress than carers of care-managed patients (P=.007). These results show that the rehabilitation service succeeded in improving functioning and helped to create a longer time-period during which older people, their carers and professionals could make appropriate decisions about their future care needs.
With the burgeoning use of qualitative methods in health research, criteria for judging their value become increasingly necessary. Interpretative phenomenological analysis (IPA) is a distinctive approach to conducting qualitative research being used with increasing frequency in published studies. A systematic literature review was undertaken to identify published papers in the area of health psychology employing IPA. A total of 52 articles are reviewed here in terms of the following: methods of data collection, sampling, assessing wider applicability of research and adherence to the theoretical foundations and procedures of IPA. IPA seems applicable and useful in a wide variety of research topics. The lack of attention sometimes afforded to the interpretative facet of the approach is discussed.
In this paper, we discuss two complementary commitments of interpretative phenomenological analysis (IPA): the phenomenological requirement to understand and ‘give voice’ to the concerns of participants; and the interpretative requirement to contextualize and ‘make sense’ of these claims and concerns from a psychological perspective. The methodological and conceptual bases for the relationship between these phenomenological and interpretative aspects of IPA appear to be underdeveloped in the literature. We, therefore, offer some thoughts on the basis of this relationship, and on its context within qualitative psychology. We discuss the epistemological range of IPA's interpretative focus, and its relationship to the more descriptive features of phenomenological analysis. In order to situate our conclusions within a contextualist position, we draw upon concepts from Heideggerian phenomenology. The argument is illustrated by excerpts from our own research on relationship break-up. We conclude by encouraging IPA researchers to embrace the interpretative opportunities that are offered by this approach.
Siblings play an important role in the lives of their brothers and sisters with intellectual disability when they reside in the parental home. Many assume a primary caregiving role following the death of their parents or when parents are no longer able to give care. Sources of stress reported by 39 adult siblings of Irish men and women with intellectual disability were explored. Siblings who were primary caregivers were older and earned less income than their counterparts in a second group who lived in the parental home and who had an especially close bond with their brother or sister with intellectual disability. Perceived social support as well as their brother or sister’s independence were significantly related to the stress reported by siblings on the short form of the QRS-F. Neither levels of reported stress nor the presence of a plan for their relative’s future distinguished the two groups of siblings.
PRE publiation text pdf: http://hdl.handle.net/10147/205279
Older parents must be assisted in making permanency plans for their adult dependant offsprings. Although attention has been given to the accelerating numbers of adults with life-long disabilities and the elderly parents who care for them at home, there has been a lack of attention for how these parents must cope with the future of their offsprings when they can no longer continue as caregivers. As a step towards filling this lacuna, the current state of knowledge is reviewed encompassing the epidemiology of these families; residential, legal and financial options associated with permanency planning; interaction of older parents with formal service systems; factors predictive of the propensity of parents to engage in permanency planning; and the benefits derived by elderly parents from having made plans for the future well-being of their dependent offsprings.
Older people who are caring for their adult sons and daughters with disabilities are under tremendous stress because they may suffer health problems themselves; have financial problems due a lifetime of caring; may have to care on their own due to the death of their spouse; worry about the future care of their child; and may feel uncomfortable approaching professionals for help. Professionals working with these families need to take contextual pressures into consideration when planning intervention. Twenty-nine parents of 27 adults with intellectual and/or developmental disabilities (including autism) were asked about present care and service arrangements, health issues, family support, and "futures planning." The research reported here identifies complex networks of relationships. Virtual absence of structured futures planning was one of the key issues. Recommendations are made for professionals working in this field. KEYWORDS: older caregivers, adults with disabilities, future planning, behavior analysis We must build a world free of unnecessary barriers, stereotypes, and discrimination.... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities. (Barack Obama, April 11, 2008).
This paper reports the results of the first systematic study of the reaction of people with learning disabilities to bereavement.
A sample of 50 parent-bereaved people with learning disabilities was compared with a matched control group of 50 non-bereaved people. A semi-structured bereavement questionnaire was used along with the following instruments: the Aberrant Behaviour Checklist (ABC), the Psychopathology Instrument for Mentally Retarded Adults (PIMRA) and the Life Events Checklist.
Highly significant differences are demonstrated between bereaved and non-bereaved samples on both the total scores and most of the subscores of the ABC and PIMRA. Staff and carers did not usually attribute behaviour problems to the bereavement and its concomitant life events, nor was there a recognition of psychopathology due to bereavement.
The impact in terms of psychiatric and behavioural morbidity of loss of a parent, with its concomitant life events, in adults with learning disabilities has been underestimated.
This study examined permanency planning by older mothers for their adult offspring with long-term mental illness, including extent of residential and financial planning, desire for future family care, and perceived need for and use of services to assist with planning.
Mail surveys were completed by 157 mothers (mean age, 67 years) from 41 states who lived with and provided care to adult offspring with serious mental disorders (mean age, 38 years). The offspring were mostly males (76 percent) and had diagnoses primarily of schizophrenia or schizoaffective disorder (60 percent), multiple diagnoses (20 percent), or bipolar disorder (16 percent).
Only 11 percent of mothers reported definite plans for their offspring's future residence, and many had done little or no planning. Three-quarters of respondents hoped that another family member would assume care, yet only one-quarter thought such arrangements would definitely occur. Two-thirds of the respondents had completed financial plans. Although more than two-thirds expressed the need for services to help with planning, less than one-third had used such services. More than half reported awareness of age-related changes in themselves or their spouse as the primary reason for planning.
Older parents of adults with long-term mental illness need professional help with planning for their offspring's future. This assistance should focus on mechanisms such as estate planning to enable case management and other services after parents' death. The involvement of nondisabled siblings in planning should also be encouraged.
The aim of this study was to carry out a preliminary examination of a research instrument developed specifically to collect cost information for individuals with autistic spectrum disorder. There is very little cost information on children or adults with autism or autism-related disorder, and no study appears to have carried out a specific cost collection in this area. Although some global cost estimates can be made, little is known about the cost implications of parental burden. By using different techniques to collect indirect costs, the study outlines a functional methodology. Results from this small pilot study point to considerable economic burden for parents and give some indication of the associated costs of autistic spectrum disorder.
Parents of children with autistic spectrum disorders (ASDs) are more likely to experience serious psychological distress than parents of children with other developmental disabilities. To examine the impact of a range of factors on psychological wellbeing, interviews were undertaken with 68 mothers of children with ASDs to explore aspects of social support, mental health status and satisfaction with services. Findings indicated that over half of mothers screened positive for significant psychological distress and that this was associated with low levels of family support and with bringing up a child with higher levels of challenging behaviour. Mothers were more likely to report lower levels of support if they were a lone parent, were living in poor housing, or were the mother of a boy with ASD. The study also investigated areas of useful support and areas of unmet need, the latter including care breaks and advice needs.
Economics, like behavioral psychology, is a science of behavior, albeit highly organized human behavior. The value of economic concepts for behavioral psychology rests on (1) their empirical validity when tested in the laboratory with individual subjects and (2) their uniqueness when compared to established behavioral concepts. Several fundamental concepts are introduced and illustrated by reference to experimental data: open and closed economies, elastic and inelastic demand, and substitution versus complementarity. Changes in absolute response rate are analyzed in relation to elasticity and intensity of demand. The economic concepts of substitution and complementarity are related to traditional behavioral studies of choice and to the matching relation. The economic approach has many implications for the future of behavioral research and theory. In general, economic concepts are grounded on a dynamic view of reinforcement. The closed-economy methodology extends the generality of behavioral principles to situations in which response rate and obtained rate of reinforcement are interdependent. Analysis of results in terms of elasticity and intensity of demand promises to provide a more direct method for characterizing the effects of "motivational" variables. Future studies of choice should arrange heterogeneous reinforcers with varying elasticities, use closed economies, and modulate scarcity or income. The economic analysis can be extended to the study of performances that involve subtle discriminations or skilled movements that vary in accuracy or quality as opposed to rate or quantity, and thus permit examination of time/accuracy trade-offs.
“I think there is a world market for maybe five computers.” Thomas Watson, Chairman, IBM, 1943 How amazing it is to behold the ways in which otherwise intelligent and creative people can be extraordinarily resistant to recognizing scientific advances at the threshold. Western Union, the greatest international communication system of the world, is said to have generated an internal memo in 1876, with this message: “This telephone has too many shortcomings to be seriously considered as a means of communication. The device is inherently of no value to us.” While many of these presumed verities are part of our scientific folklore, there is apparently no doubt that Lord Kelvin, an important contributor to the principle of the conservation of energy, and the president of the Royal Society in London, said in 1895, “Heavier-than-air flying machines are impossible” (Lindley, 2003). Sometimes our vision of the future requires not a leap of faith but a scientific jump-start. Grass-roots visionaries are sometimes both imaginatively bolder and less delayed by establishmentarian constraints. Recent advances, for example, in childbirth practices involving less use of maternal anesthesia, the redesign of birthing areas in maternity hospitals, and the acceptance of nurse-practitioner midwives, have resulted largely from pressures brought by women resisting the old ways. If the development and widespread use of the telephone, or of aircraft, or of computers had been delayed for a year or two, due to the short-sightedness of those in positions required to promote their development, perhaps little would have been lost in the total picture of things, especially in the long run.
This Australian study examined the roles that siblings played in the lives of older people with intellectual disability and factors affecting this. The sample comprised 62 people aged 55 years and older who had intellectual disability and had lived with their parents until mid-adulthood. An extensive case-finding strategy ensured that people unknown to specialist services were included in the sample. In-depth interviews were conducted with a person with a close long term relationship with each subject, service providers and 51 of the subjects. Nearly half the sample had a sibling who acted as their primary carer after the death of parents. However, in most cases this was not a permanent arrangement. In the longer term a majority of older people did have a sibling who took responsibility for their well-being and played strong advocacy, mediator and supervisory roles. Fulfillment of such roles was associated with a lifelong close relationship between siblings.
Doing interpretative phenomenological analysis This chapter introduces one particular form of qualitative analysis, interpretative phenomenological analysis (IPA) and takes the reader through the stages of conducting studies employing IPA, with illustrations taken from the authors’ own research in health psychology. 1 The main aim is to provide the reader with detailed descriptions of the analytic process, and therefore the theoretical orienting material is kept to a minimum. Readers interested in knowing more about the theoretical underpinning and rationale of IPA are referred to Smith (1996). After a brief introduction, the bulk of the chapter is taken up with two extended examples of IPA in practice. In the first, an idiographic, case-study approach is outlined, where the analysis slowly builds from the reading of individual cases to claims for a group. This procedure is illustrated with material from a project on patients’ perceptions of chronic back pain. In the final The ...
One effect of rising health care costs has been to raise the profile of studies that evaluate care and create a systematic evidence base for therapies and, by extension, for health policies. All clinical trials and evaluative studies require instruments to monitor the outcomes of care in terms of quality of life, disability, pain, mental health, or general well-being. Many measurement tools have been developed, and choosing among them is difficult. This book provides comparative reviews of the quality of leading health measurement instruments and a technical and historical introduction to the field of health measurement, and discusses future directions in the field. This edition reviews over 100 scales, presented in chapters covering physical disability, psychological well-being, anxiety, depression, mental status testing, social health, pain measurement, and quality of life. An introductory chapter describes the theoretical and methodological development of health measures, while a final chapter reviews the current status of the field, indicating areas in which further development is required. Each chapter includes a tabular comparison of the quality of the instruments reviewed, followed by a detailed description of each instrument, covering its purpose and conceptual basis, its reliability and validity, alternative versions and, where possible, a copy of the scale itself. To ensure accuracy, each review has been approved by the original author of each instrument or by an acknowledged expert.
Forty-one pairs of parents and siblings of adult family members with mental retardation completed questionnaires concerning future planning. Family members with mental retardation were living with one or both of their parents. Although almost half of the siblings were willing to assume caregiving responsibilities in the future, parents were reluctant to have them take on caregiving. Cognitive demands of the adult-children with mental retardation and family communication were predictive of siblings' willingness to help with future caregiving. Physical incapacities of adult-children were related to parents' future plans and their disinterest in having family members assume future caretaking. Implications for assisting families with permanency planning are discussed.
The well-being of a sample of older mothers of adults with retardation who live at home was compared with that of other samples of caregiving women and women their age. The results indicated that the mothers in the present sample were functioning as well as or superior to the reference groups, suggesting that positive adaptation to long-term caregiving is typical. The long-term care plans of mothers of adults with retardation were also examined. Over half of the mothers anticipated continued family-based responsibility for the care of their adult child with retardation; only. one-third viewed residential placement as a viable option. Explanations are offered for the reluctance of mothers to consider publicly-supported residential programmes .
From the 1820s to the present, disability planning in South Asia has faced hard choices, compounded by the submersion of indigenous concepts in well-intentioned western exports of welfare ideologies and eurocentric social sciences. Cultural imperialism continues, with western evangelists insisting that South Asian disability development be seen in terms of human rights and community-based rehabilitation, regardless of the actual strengths and weaknesses of communities. Reconceptualisation of disability planning, focusing on information factors of concept, knowledge, skills, design and feedback, has been suggested as an alternative approach. However, the associated information media, while offering hope to millions, will again divide those who gain access from the hundred-millions who remain info-poor. Western information concepts risk overwhelming indigenous knowledge and diminishing the cultural confidence needed for South Asians to find their own appropriate solutions. To counteract this tendency, a strong base of Asian disability history is needed.
This paper introduces interpretative phenomenological analysis (PA) and discusses the particular contribution it can make to health psychology. This is contextualized within current debates, particularly in social psychology, between social cognition and discourse analysis and the significance for health psychology of such debates is considered. The paper outlines the theoretical roots of PA in phenomenology and symbolic interactionism and argues the case for a role for PA within health psychology. Discussion then focuses on one area in the health field, the patient's conception of chronic illness and research in medical sociology from a similar methodological and epistemological orientation to PA is introduced. The paper concludes with an illustration of PA from the author's own work on the patient's perception of renal dialysis.
The topic of future care provision for adults with intellectual disability living in the family home is becoming of increasing interest to researchers since epidemiological evidence indicates that this group of people will make increasing demands for residential provision in the future. Deriving information from a previously reported study on the structure and characteristics of the informal support networks, this paper describes the future residential and financial provision planned for a group of people with intellectual disability over the age of 40 years living with relatives in the family home and investigates the factors which influence carers' decisions to plan for the future.
A semi-structured interview enabled both quantitative and qualitative data to be collected. Results indicated that plans for the future residential care were minimal. Only 28% of carers had made any concrete plans for future residential care of their relative. In the majority of cases, carers were committed to maintaining long-term home care for their relative with intellectual disability for as long as possible. Attention is drawn to the significant number of elderly parental carers (82% of this sample) who have not made concrete future residential arrangements. Carers were more likely to establish financial plans than residential plans for their family member. No clear differences were found between carers to indicate factors influencing whether they had made preparations for the future. Explanations for the reluctance of carers to plan for the future were, therefore, explored. The overall conclusion to be drawn from the research is that ‘crisis’ resettlement due to ill health or death of the main carer is highly likely. The potential role of service-providers is briefly discussed.
The quality and costs of residential supports provided to adults with intellectual disabilities (IDs) living in the UK and Ireland were investigated. The present paper describes findings related to relatives' level of contact with their family members and their appraisal of current residential supports. The relatives (n = 210) of adults living in campus settings and dispersed housing completed a questionnaire devised to determine their satisfaction with their family members' current residential supports and were invited to name both the features which they like and features which they wish to see improved. Relatives whose family members with IDs lived closer to the family home, who were younger and who took part in more daily activities in their current residence reported higher levels of contact. The respondents believed that current residential supports were better than those previously received. While relatives of residents in campus settings reported higher levels of family contact, satisfaction ratings were similar for relatives of residents in both campus settings and dispersed housing. Staff support, physical aspects of the residences and the standard of care provided were the aspects of residential supports which were most liked; preferred improvements included higher staff ratios and better day activities. Levels of family contact may be predicted by distance as well as by residents' characteristics and type of residence. A considerable overlap among groups of relatives as to ratings of satisfaction and the aspects of residences which they liked was apparent. Research strategies targeting informed appraisals of service quality on the part of both residents and their relatives are proposed.
Happy families are all alike; every unhappy family is unhappy in its own way.
– Leo Tolstoy, Anna Karenina, Part 1, Chapter 1
Despite recurring concerns about the role and appropriate support of informal carers, little is known about the parental experience of caring for children with learning disabilities in Ireland. This study describes and analyses the nature and consequences of care and coping among parents of children (<16) with learning disabilities living in the Greater Dublin area. Participants (n = 32) completed the Caregiver Strain Questionnaire and an adapted version of the Carers Questionnaire which assessed: care tasks/behavioural difficulties; caregiver attitudes; service provision; and coping strategies. Qualitative analysis examined factors affecting carers’ ability to cope. Participants showed high levels of objective and subjective caregiver strain and most were receiving inadequate support. However, parents employed a range of strategies to help them cope more effectively. The qualitative data highlighted the difficulties and rewards of caregiving and the inadequacies of current service provision.
Over the past 20 years, research across the developed world has identified trends towards ageing of the population with learning/intellectual disability. Alongside is the recognition that family-carers are also ageing. Recently, the UK government has sought to identify the future housing needs of dependents with intellectual disability residing with older carers. Consequentially, a city council commissioned this qualitative study involving 28 older carers. The findings indicate a need for information about housing options, a lack of practical support and feelings of marginalisation. The conclusions suggest key roles for social services in providing proactive support and advice to family-carers, and a greater degree of joint working between social services departments and housing agencies. These resonate with similar international studies and provide the opportunity to focus on the perspectives of family-carers. Their experiences are real, and if welfare professionals are to work with people with intellectual disability and their family-carers, acknowledging their views is essential.
Between joy and sorrow: being a parent of a child with developmental disability
Aim. This study explored the experiences of parents who have children with significant developmental disability.
Background. Prevailing societal and professional assumptions of parental crisis and maladjustment in response to the ‘tragedy’ of having a disabled child did not accord with the authors’ practice experience. Whilst parents confronted numerous difficulties, most of them appeared to manage with optimism and remarkable resourcefulness.
Research design. The study, using an interpretive methodology informed by phenomenology, intensively explored the experiences of six parents of children with significant developmental disability.
Findings. Although they experienced much anguish and sorrow, the parents also spoke of hope, love, strength and joy. Interpretation of the parents’ experiences revealed the themes of ‘joy and sorrow’, ‘hope and no hope’ and ‘defiance and despair’, mediated by ‘the tensions’.
Conclusions. This phenomenological interpretation provides insight and understanding into the parents’ experiences and has implications for practice, education and research in nursing.
This phenomenological study describes the impact of an educational intervention on the day-to-day experiences of older parent caregivers of adults with developmental disabilities who were engaged in the process of future-care planning. Qualitative strategies of individual and focus group interviewing were used with a purposive sample of older caregivers. Participants were members of an existing parent support group. Twenty-three caregivers representing 18 families were queried before and after the education program. The disabilities represented were mental retardation, cerebral palsy and autism. Parents whose children live at or away from home were included. The intervention was conducted on five Saturdays over a two month period; the duration of the study was five months. Findings used typical words of the respondents from their individual and focus group interviews to describe feelings, attitudes and experiences in making future-care plans. Data from verbatim transcriptions and researcher's field notes were coded, analyzed, sorted into themes, and subjected to interpretive analysis. Respondents showed a positive change in attitudes and actions after participating in the education program, regardless of their initial stage in care planning. Fears were replaced by hope and determination; hesitation and ineptitude by feelings of competence and confidence; and procrastination and delay by purposeful actions. Other key findings: use of a planning document greatly aided caregivers; barriers to planning were often intrinsic and amenable to education; residential plans were the most difficult aspect of planning; listening to the experiences of other parent caregivers was helpful; and making burial plans for their offspring was one aspect of planning parents wished to do themselves.
This paper seeks to highlight the impact of the Carers (Recognition and Services) Act of 1995 on carers of people with learning disabilities. It draws on research conducted in the south west between 1997 and 1999, which examined the views and experiences of carers who had an assessment of their needs, together with those of the person they care for and the professional conducting the assessment. It concludes that the Carers Act is not widely used, or understood, by this group of carers. Recommendations for improving practice include changes to the current terminology, new triggers for a carer's needs assessment, and a greater input from other agencies, especially health services. Although the current paper focuses on the views and experiences of carers, an exploration of the Carers Act, and its effect on potential conflicts of interest with the person with learning disabilities, is available elsewhere (Williams and Robinson, 2001).
The Valuing People White Paper ( Department of Health, 2001 ) requires services to secure a plan for all service-users with learning disabilities living with older carers and promises them and their families more choice and control over how and where they live. This paper examines the views of the older carers (aged over seventy) of sixty-two adults with a learning disability about planning for the future. Fifty-six took part in interviews in their own homes and six completed a questionnaire. All carers were white and recruited from one local authority in response to the requirements of the White Paper. Findings indicate that a significant proportion (thirty-four—55 per cent) is either not ready or is unwilling to make future plans. Barriers to planning include a perceived lack of need due to the existence of two carers, a lack of awareness of timescales involved in securing housing, difficulties in letting go, a lack of confidence in available housing options, and the existence of mutually supportive relationships. The findings show a need for a proactive approach to information and support provision to enable these families to work through a process of making plans for the future. This is essential to prevent the need for emergency placements in response to crisis and in turn to ensure that adults with learning disabilities have genuine choice and involvement in how and where they live.
Recent evidence about the extent of caring for older people by older people themselves, and about the importance of spouse care, has challenged existing debates about gender and care. Male carers, particularly older husbands, have been ‘discovered’. This paper attempts to reconceptualize the debate about gender and caring to take account of these developments, particularly to develop an understanding of the caring activities of older male carers and to elaborate the implications for community care policy.
The evidence suggests there are circumstances where men accept the obligation to care, undertake intimate personal care, and derive identity and reward from their caring work, driven by similar motives and experiencing similar struggles as women. Rather than seeking maximum distinction between the motives and experiences of women and men carers, the paper suggests that one important way to promote non-sexist community care is to explore the conditions where men's caring is undertaken and how it can be understood and developed.
In a study of 57 older parent caregivers of adult children with mental retardation, more than half had not planned for their child's future care. Income, race, child's gender and level of adaptive behavior, and degree of parental interaction with relatives and friends were significantly related to future care-planning activity.
Future residential plans and placement preferences of 340 mothers of adult children with mental retardation living at home were examined and findings from a 3-year follow-up discussed. Four subgroups of families were compared based upon residential plans and preferences for continued home residence for the next 2 years. Significant group differences were found for background characteristics, maternal psychological well-being, and support systems. Less than 50% had made residential plans, and the majority believed their child would still be at home in 2 years. At 3-year follow-up, 22% of the families with short-term residential plans had achieved a placement compared to 14% among families without a plan who wanted a placement.