What Stress Can a Family Have With a Child With Disabilites

Abstract

Parents of children with intellectual disability (ID) tend to study college-than-boilerplate rates of stress, anxiety and low. Chronic psychological distress may place parents at increased run a risk of marital disruption, family dysfunction, and for a number of concrete and mental health weather condition. The prevailing approach in the literature starts from the premise that (the care needs of) the kid with ID is the stressor and, in doing so, equates resilience with the successful adaptation of families to caring for a kid with ID. This approach naturally leads to proposals for special services aimed at modifying or reforming the individual child, caregiver and/or family unit. In this paper, we highlight some of the limitations of a inquiry programme that frames the trouble as family adaptation to caring for a kid with ID. We debate for expanding the enquiry calendar to consider the adaptation of families caring for children with ID through greater understanding of the social-ecological constraints on families and the resources needed to meet the 'normal', everyday adaptive challenges they face.

Introduction

At that place is an extensive literature on family adjustment and accommodation to caring for a child with intellectual disability (ID). The dominant arroyo to research in this field starts out from the assumption that (the care needs or daily hassles associated with caring for) the child with ID is a 'stressor', defined every bit a threat, challenge or demand that taxes or exceeds an individual's capacity to adapt [1]. Researchers and so focus on stress and coping processes and what are normally presumed to be outcomes for parents and other family members, including psychological distress and family dysfunction. This research has had a number of positive impacts. It has, for instance, helped justify services such as in-home assist, psycho-educational programmes for parents and respite intendance. In this newspaper, some of the key letters from this inquiry are reviewed. The main purpose of this newspaper, however, is to highlight some of the limitations of a research program that frames 'the problem' as family adaptation to caring for a kid with ID. Nosotros contend that the research calendar must expand to accelerate understanding of the adaption of families caring for children with ID. Underpinning this statement is the basic premise that parents of children with ID confront the same primal adaptive claiming every bit families with not-disabled children: they are families beginning. Similar other parents, they have to weave together varied family interests and activities into a sustainable daily routine, i.e., a routine that satisfactorily answers the question: How are we to reconcile what we desire for our children, ourselves and our family unit with what is possible given our circumstances?

Stress

Numerous studies have constitute college than 'population normal' rates of psychological distress amongst mothers and, less consistently, fathers of children with ID. Recent population-based studies and systematic reviews confirm that mothers of pre-adult children with ID are two to three times more likely than mothers of typically developing children to study clinically significant levels of stress, anxiety and depression [2, iii, 4•, v]. Parents of adult children with ID may enjoy meliorate mental wellness [six, seven, viii••]. However, there is some albeit express evidence that mothers of adult children with ID are at increased gamble for concrete health conditions that are etiologically associated with chronic stress, such as obesity, cardiovascular illness, auto-immune diseases and gastro-intestinal disorders [8••, 9, x••, 11]. Chronic stress may too underlie the (marginally) increased chance for families of children with ID of marital disruption and family dysfunction (eastward.g., depression cohesion, emotional withdrawal, relationship disharmonize and child maltreatment) [12–18]. Selected recent study findings are summarised in Tabular array 1.

Table 1 Selected comparing studies, 2010–2015

Full size table

Over the terminal two decades, researchers have opened the 'black box', ^{Footnote 1} that is, to consider mechanisms or mediators that might explicate the association betwixt child ID and what are presumed to be negative psychological impacts or outcomes. A fundamental enquiry finding is that (a) children with ID are more than likely to exhibit internalising and externalising behaviour bug in comparison with typically developing children, and (b) in the absenteeism of significant child behaviour problems, parents of children with ID practice not, on average, report heightened levels of distress [4•, 16, 27, 28]. Furthermore, several prospective studies have plant that kid behaviour problems predict later parent stress, and this may mediate the relationship between child behaviour problems and family dysfunction [29–33]. Baker et al. [13], for case, found that the behaviour problems of children with Delicate X had an indirect upshot on family cohesion and marital satisfaction by manner of maternal internalising symptoms. Of course, this body of research does not actually explain why certain behaviours are problematic or stressors for parents and families. ^{Footnote ii} Moreover, parent distress may be the antecedent rather than the event of child behaviour problems: Loftier parent distress is associated with less optimal parenting and more negative parent-child interaction which, in turn, predicts kid behaviour problems. Even so, the human relationship between child behaviour problems and parent distress is generally considered transactional [29, 31, 33, 34].

When children with ID (or the behaviour problems they exhibit) are conceptualised as stressors, the inclination to interpret parental distress and family unit dysfunction every bit stress reactions or negative impacts may exist irresistible, however the vast majority of studies in the field are correlational, and plausible alternative explanations accept non been ruled out. First, information technology is possible that the association between child ID and parent psychological distress is the result of psychological distress increasing the risk of ID in children. In that location is compelling evidence that poor parental mental health can take an impact on the cognitive evolution of children, for case, by style of unresponsive care (low investment) or negative parent-kid interactions [35–37]. Second, the association between kid ID and parent psychological distress may be explained by a third (confounding) variable. Socioeconomic disadvantage, for example, is causally related to (mild) ID and parental mental health, likewise as child behaviour problems and family unit dysfunction [23, 38••, 39–41]. The higher-than-population normal levels of psychological distress found amongst families of children with ID might therefore be attributable to pre-existing socioeconomic disadvantage (the distal cause), rather than child ID per se. Notably, a serial of population-based studies over the terminal decade have plant that the increased take chances of parental psychological distress associated with kid disability is markedly attenuated when socioeconomic disadvantage is adequately taken into account [42–44]. Emerson et al. [38••], for example, conducted a secondary assay of the Millennium Cohort Study in the UK and constitute that after matching on socioeconomic variables, likely psychiatric disorder was no more likely to exist found amongst fathers of children with early cognitive delay, and the strength of this association for mothers was substantially macerated.

Another possibility is that the higher-than-normal levels of distress and dysfunction found among families of children with ID are the product of disablism, rather than any characteristic of the child. Researchers and parents themselves take challenged the (normally) tacit assumption that having a child with ID is inherently, essentially or inevitably negative [45–48]. Some researchers accept focused attention on the harmful consequences of culturally ubiquitous prejudices: Disability is generally causeless to be aberrant, tragic and pitiable [49–52]. Such cultural beliefs reify parent grief and parent efforts to normalise their child, oftentimes at cracking personal price [53–56]. Farther, owing to such beliefs, parents may feel the sting of social stigma attached to disability and endure the hurt of social exclusion [57, 58•, 59, 60]. Other researchers have focused attention on socioeconomic deprivations. For example, the opportunity for parents of children with ID to participate in the workforce and generate income is limited past inflexible employment conditions (east.thousand., inflexible work hours) and unequal access to childcare resource [7, 61–63]. Formal and informal childcare are recognised as essential for many parents (with or without a disabled child)—enabling them to juggle piece of work and family demands—but inclusive childcare settings are in brusk supply [64, 65]. Such inequitable access to resources may explain, at least in part, why four out of 10 parent carers in Canada report reducing their work hours and why one in v have quit work altogether [66]. In plough, reduced workforce participation may explain, at least in part, why families of children with ID are more likely to be exposed to agin socioeconomic conditions [62, 67].

Out-of-the-ordinary fourth dimension demands may further stack the odds confronting families of children with ID. Time-utilise studies accept found that parents of children with disabilities devote considerably more time than parents of typically developing children to ordinary childcare tasks [68]. In improver, parents may invest considerable fourth dimension and energy in the challenging procedure of accessing and navigating supports: Service discontinuity places a strain on families of children with disabilities [55, 69, 70], and so there is the expectation that parents will invest considerable time, energy and financial resources in the amelioration of their child'southward impairment (e.g., keeping appointments with professionals, implementing home programmes then on). In a recent study, McConnell et al. [54] investigated the relationship between parent-mediated intervention for children with disabilities and family well-being. The study found that parents cut dorsum on employment-related activities, personal leisure and family unit time in order to create a slot in the daily routine for the implementation of prescribed therapeutic activities. The number of cutbacks (i.e. level of parent cede) was found to exist positively associated with time spent implementing prescribed therapeutic activities, but negatively associated with family well-beingness. Notably, the observed consequence of parent cutbacks on family well-existence was larger than the observed effect of child characteristics, including adaptive behaviour deficits. The investigators conclude that rehabilitation professionals must weigh upwardly the pros and cons of parent-mediated intervention and await to enfolding therapeutic activities for children with disabilities into the everyday family routine.

Locating the problem in contemporary social arrangements—rather than the kid—leads to the conclusion that interventions to build resilience in families of children with ID, with the goal of helping them trounce the odds, are insufficient. What's required is intervention at a higher level: sociopolitical action and policy reform to change the odds for families of children with ID.

Resilience

A bespeak of consensus amongst researchers in the field is that families of children with ID face adversity, or in the very to the lowest degree, meaning, out-of-the-ordinary adaptive challenges. Another point of consensus is that while many may struggle, most families of children with ID fare well. Although researchers have consistently found higher-than-usual rates of psychological distress amid parents of children with ID, the accented take chances of psychiatric disorder may not be equally large every bit many might recall. The majority of parents caring for a child with ID are non depressed [five, 7, 71]. Furthermore, well-nigh families of children with ID study positive impacts. McConnell et al. [72•] recently surveyed a robust sample of primary parent carers of pre-adult children with disabilities in Alberta, Canada, and found that two thirds agreed or strongly agreed with the statement: "Overall, having a kid with disabilities has been positive for our family". More than four out of v parents in the study reported benefits including but not limited to perspective transformation (e.thou., "Nosotros have learned what is actually of import in life") and the strengthening of family relationships (e.grand., "Our family has emerged stronger"). From a stress and coping theory perspective, such parent-reported benefits may be conceptualised as 'positive illusions' which help fuel parent efforts at coping. However, the current evidence suggests that parent-reported benefits are meliorate viewed as veridical (i.e. corresponding to fact) accounts of positive touch on and transformation [47, 48, 72•, 73].

Given the challenges and hardships faced by families of children with ID, those who fare well, in whatever way this is operationally defined, might be described equally resilient. Merely how much adversity a family must face before successful adaptation tin exist regarded as a sit-in of resilience is however a topic of debate [74]. Patterson [74] suggests that families demonstrate resilience when, despite adversity, they are competent in performing (one or more than of) four core family functions including membership and family formation; economic support; nurturance, didactics and socialisation; and protection of vulnerable members. Ecocultural theory suggests that a sustainable daily routine may be the sine qua non of resilience [75, 76]. A sustainable daily routine is viable (i.due east. fitted to the local ecology and family resource base) and congruent with the family's values and goals and with the needs, interests and competencies of family unit members [77, 78]. In most studies, however, information technology seems resilience among parents and families of children with ID is implicitly defined as the absence of psychological distress or family dysfunction.

The study of resilience is the search for an explanation of why information technology is that some families overcome adversity when others, faced with the aforementioned or a like gear up of circumstances, buckle. In the family and disability field, this search has, for the most part, been enabled and constrained past psychological models of stress and coping. Past starting out from the premise that (the care needs of) the child with ID is a stressor, studies informed by stress and coping theory equate resilience with the successful adaptation of families to caring for a kid with ID. Although stress and coping theory is ostensibly transactional (outcomes are the product of continuous interaction over time between intrinsic and extrinsic factors), the bulk of this research has focused on intrinsic factors [east.g., 28, 61, 79–81]. This is consistent with McCubbin and McCubbin's [82] early definition of the study of resilience every bit the search for "…characteristics, dimensions, and properties of families which help families to be resistant to disruption in the face of change and adaptive in the confront of crisis situations" (p. 247). A number of studies have looked at the stress-buffering office of social support. However, as Emerson et al. [38••] discover, "…aspects of social context have often been relegated to the status of groundwork noise" (p. 31).

This literature on the resilience of families caring for a kid with ID has been reviewed by Grant et al. [79] and about recently by Peer and Hillman [83]. Grant et al. [79] identify 3 cadre resilience processes. These are the search for meaning (in which cognitive coping is key), maintaining a sense of control (i.e. managing difficult situations as an adjunct to making sense of them) and maintaining valued social identities (e.thou., effectively combining care-giving with employment and other group memberships). Peer and Hillman [83] reviewed qualitative and quantitative articles written in English and published betwixt 1986 and 2012 and identified three empirically supported resilience factors: dispositional optimism, problem-focused coping (including 'positive reappraisal') and social support. Dispositional optimism is the trend to wait for the positive and wait positive outcomes when confronting problems in life. Problem-focused coping involves altering internal or external situational demands and (planful) problem-solving to preclude a stressful situation from recurring. This form of coping may be juxtaposed with emotion-focused/ escape-avoidancecoping strategies. The third gene, social support, may be enacted or perceived and formal or breezy. The evidence suggests that it is the perception of social support from informal sources (and the feeling of belonging) that may be most uplifting [24, 25, 84–86]. An unresolved question is whether social support is a moderating factor (stress-buffer) and/or acts more directly on parent and family unit well-beingness.

A potential concern is that (i) by framing the problem as ane of family accommodation to caring for a child with ID and (2) by treating the social and ecological context in which families live as a background given, research on the resilience of families caring for a child with ID has certain predictable outcomes. To some extent, the sorts of bug that are identified and, in plow, the sorts of solutions that are proposed are pre-determined. Specifically, psychological models of stress and coping quite naturally lead to proposals for 'special services' aimed at modifying or reforming the individual kid, caregiver and/or family. Less consideration may be given to social-ecological constraints and resources that families of children with ID may need in order to meet the normal, everyday adaptive challenges they face. As discussed above, families of children with ID no doubt need, simply have unequal access to the kinds of resources that all (or most) families need in society to successfully juggle work and family demands, such every bit meaningful and flexible employment and affordable childcare options.

Intervention studies offering a potentially powerful means of testing ideas near the underlying mechanisms or 'causes' of psychological distress and dysfunction among families of children with ID. If, for example, child behaviour bug explicate heightened levels of psychological distress and coping strategies explicate or contribute to resilience, so interventions that effectively ameliorate behaviour problems and/or equip parents with effective coping strategies should reduce psychological distress and family dysfunction. Singer et al. [87] conducted a meta-analytic review and compared outcomes across iii categories of intervention for parents of children with developmental disabilities: behavioural parent preparation (BPT), cognitive behaviour therapy (CBT) and multi-component interventions (BPT + CBT). The authors practice non written report on child behaviour change but annotation that "…in every instance there was a meaning improvement in adaptive behavior or decreases in trouble behavior" (p. 363). On measures of parent distress, the average-weighted effect sizes for BFI and CBT interventions were statistically pregnant merely small. A substantially larger boilerplate effect size was found for multi-component interventions. The investigators draw the conclusion that there are established bear witness-based interventions for reducing psychological distress "…at to the lowest degree in centre-class mothers in the short term" (p. 357). These findings raise a number of questions including: Do risk and resilience factors vary depending on socioeconomic position? Peradventure, families who are exposed to socioeconomic arduousness crave dissimilar or additional supports.

Ecocultural theory offers an alternative theoretical approach to conceptualising and investigating the resilience of families caring for a child with ID. The theory is non inimical to stress and coping theory. Rather, it encompasses and contextualises stress and coping processes. Ecocultural theorists may argue—along with Ungar [88] and Masten et al. [89], among others—that resilience has more than to practice with the availability and accessibility of culturally relevant resource than with individual or intrinsic factors: If reasonably good (social and economical) resource are present, and then outcomes are likely to be expert. A central tenet of ecocultural theory is that all families everywhere face the same central adaptive claiming. That is, sustaining a meaningful daily routine. The theory therefore lends itself to the written report of the adaptation of families caring for a child with ID, although researchers have applied ecocultural theory to the study of family adaptation to caring for a kid with ID [76]. The process of sustaining a daily routine involves fitting the routine to the local ecology and family resource base. Resources fit, when family unit resources roughly friction match and support the activities the family weaves into a daily routine, is a necessary simply bereft condition for sustainability. In addition, parents endeavour to organise their daily routine in a personally meaningful and socially respectable way. This involves fitting the daily routine to the family's values and goals and finer juggling the varied and inevitably competing needs and interests of family members. Ecocultural theory posits that a daily routine that holds little meaning and/or revolves around the needs of whatever one family unit member is a less sustainable daily routine [76, 78, 90].

Ecocultural theory was recently applied in a multi-method study to identify predictors of resilience among families caring for children with disabilities [91]. Resilience was operationally defined as family life congruence (i.eastward. the extent to which the daily routine was congruent with the family's values and goals and the needs and interests of family unit members). A stratified random sample of 538 families caring for children with disabilities in Alberta, Canada, took part. The bulk of research subjects were mothers, and nigh were caring for a child with ID and/or an autism spectrum disorder (ASD). The first finding of this study was that family life congruence was a stronger predictor of family propensity to place their disabled child out of home (e.thou., in state care) than a widely used mensurate of family functioning. A 2nd finding, which is consistent with previous research, was that parents of children with ASD, on boilerplate, reported the lowest level of family life congruence. A 3rd finding, also consistent with previous research, was that controlling for the number and intensity of child behaviour problems [measured using the Developmental Beliefs Checklist; 92] reduced the force of the association betwixt impairment blazon (diagnosis) and family life congruence to non-significance. The chief hypothesis of the written report, however, was that families caring for disabled children exhibiting behaviour bug 'do well' (i.e. demonstrating resilience) nether conditions of loftier social support and low financial hardship. This hypothesis was well supported: Families with high levels of social support and low levels of fiscal hardship typically enjoyed average or above average family life congruence fifty-fifty when the number and intensity of child behaviour problems were high. While one in three families caring for a disabled child exhibiting behaviour problems reported above boilerplate family life congruence, fewer than one in 100 did then in the absenteeism of high social back up and low financial hardship. The report also found that families who experienced low levels of social support and high levels of financial hardship commonly struggled, even when the number and intensity of child behaviour issues were depression. The authors conclude that in that location is a need to broaden the research and policy calendar: A balanced agenda will accost the social and ecological determinants of resilience, along with intrinsic factors.

At that place is a paucity of research evaluating interventions targeting social-ecological factors associated with psychological distress and dysfunction amongst families of children with intellectual or other disabilities. Peer support (parent-to-parent) interventions have perhaps received the most research attention to date. Shilling et al. [93•] have conducted 1 contempo systematic review of this literature. A Cochrane review is besides proposed [94]. Shilling et al. report that the results of qualitative and quantitative evaluations of peer back up interventions confirm that these can have a positive outcome on the psychological wellness of caregivers, although the findings are non entirely consistent. Based on a synthesis of qualitative findings from ten studies, Shilling et al. identify four themes related to benefits. The most mutual benefit identified was 'finding a shared social identity with other parents'. In a grouping with experientially similar others, parents found understanding and acceptance, which reduced their sense of isolation and enabled them to feel better able to cope. The second do good identified was 'learning from the experience of others'. Peer support interventions tin can facilitate the commutation of useful, practical information, and parents acquire from the feel of other parents. The third theme related to benefit is 'personal growth'. Parents written report having gained forcefulness through peer back up: They were more than accepting of themselves and felt more confident and in control. The fourth benefit is 'the opportunity to support others'. In several studies, parents reported that the opportunity to share their experience and support others validated their expertise as parent carers, giving them an increased sense of self-worth. Shilling et al. suggest that in that location is a need for more robust evaluations to enable parents and service providers to make informed decisions near the potential benefits and costs of peer back up 'services'. To this, we would add together that there is an urgent need for research evaluating interventions that focus on equalising economic opportunity for families of children with ID including, for example, flexible work and inclusive childcare policies.

Conclusions

In summary, caring for a child with ID is associated with an increased risk of psychological distress amongst parents and family dysfunction. Despite the proliferation of studies investigating what are usually presumed to be negative impacts of caring for a child with ID, the underlying mechanisms remain poorly understood. Some researchers have investigated the potentially mediating role of child characteristics. These studies have produced evidence consistent with the thesis that child behaviour problems explain the higher-than-population normal rates of psychological distress and dysfunction found amid families caring for a kid with ID. The implication is that strategies to better the behaviour problems exhibited past children with ID may close the well-being gap. The study of family accommodation to caring for a child with ID further suggests that parents may benefit from interventions such as behavioural parent training and cognitive behaviour therapy, which can equip them with effective coping strategies, including skills in positive reappraisal and solution-finding. Such strategies may assist families 'beat the odds'.

In this paper, nosotros take argued in favour of expanding the research agenda to consider the adaptation of families, and not but family accommodation to caring for a child with ID. Ecocultural theory, with its focus on the universal adaptive challenge (i.e. sustaining a meaningful daily routine), may be useful in this regard. Such an orientation may help researchers and policymakers avoid the pitfalls of a research approach that builds on the dubious assumption that having a kid with ID is a threat. Such pitfalls include the fundamental attribution error, which is the tendency to overestimate the bear upon of individual-intrinsic factors, and underestimate the influence of situational-contextual factors on behaviours or outcomes. This programme of inquiry would give equal attention to intrinsic family factors and disabling social weather. Our ain position is that there is nothing natural or inevitable about the heightened levels of psychological distress and dysfunction found amongst families of children with ID: These are the result of institutionalised patterns of social value (devaluing persons with disability) and contemporary social arrangements that practice not take the needs, interests and circumstances of these families into account. To close the well-being gap, we recollect that sociopolitical activity and policy reform aimed at changing the odds, that is past equalising opportunities for families of children with ID to sustain a meaningful daily routine, are equally vital, if not more than then, than interventions designed to assistance these families vanquish the odds.

Notes

1. 'Black box epidemiology' is a derogatory characterization given to the unproblematic identification of exposure-affliction relationships [26]

2. Behavior problems may demand a higher degree of vigilance on the part of parents (which may exhaust cocky-regulatory resources) and are a potential threat to a family's social respectability and inclusion.

References

Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

1. Aneshensel S, Mitchell UA. The stress procedure: its origins, evolution, and future. In: Johnson RJ, Turner RJ, Link BG, editors. Sociology of mental health: selected topics from forty years 1970s–2010s. New York: Springer International Publishing; 2014. p. 53–74.

   Chapter  Google Scholar

2. Emerson E. Mothers of children and adolescents with intellectual disability: social and economic situation, mental health status, and the self‐assessed social and psychological touch on of the child'south difficulties. J Intellect Disabil Res. 2003;47(4‐v):385–99.

   Article  CAS  PubMed  Google Scholar

3. Lee J. Maternal stress, well-being, and dumb sleep in mothers of children with developmental disabilities: a literature review. Res Dev Disabil. 2013;34(11):4255–73.

   Article  PubMed  Google Scholar

4. Totsika V, Hastings RP, Emerson E, Lancaster GA, Berridge DM. A population‐based investigation of behavioral and emotional bug and maternal mental health: associations with autism spectrum disorder and intellectual disability. J Child Psychol Psychiatry. 2011;52(1):91–9. A unique population-representative study. One meaning finding is that the presence of ASD, simply not ID, significantly increased the odds for maternal emotional disorder.

5. Singer GH. Meta-assay of comparative studies of depression in mothers of children with and without developmental disabilities. Am J Ment Retard. 2006;111(iii):155–69.

   Commodity  PubMed  Google Scholar

6. Chen SC, Ryan‐Henry S, Heller T, Chen EH. Health status of mothers of adults with intellectual inability. J Intellect Disabil Res. 2001;45(5):439–49.

   Article  CAS  PubMed  Google Scholar

7. Seltzer MM, Greenberg JS, Floyd FJ, Pettee Y, Hong J. Life grade impacts of parenting a child with a disability. Am J Ment Retard. 2001;106(3):265–86.

   Commodity  CAS  PubMed  Google Scholar

8. Seltzer MM, Floyd F, Vocal J, Greenberg J, Hong J. Midlife and aging parents of adults with intellectual and developmental disabilities: impacts of lifelong parenting. AJIDD Am J Intellect. 2011;116(six):479–99. This longitudinal population study provides detailed analysis on a broad range of social and personal measures.

   Google Scholar

9. Gallagher S, Hannigan A. Child trouble behaviors are associated with obesity in parents caring for children with developmental disabilities. Res Dev Disabil. 2015;36:358–65.

   Commodity  Google Scholar

10. Miodrag N, Hodapp RM. Chronic stress and its implications on health among families of children with intellectual and developmental disabilities. In: Hodapp RM, editor. International review of enquiry in developmental disabilities, vol. 41. Oxford: Elsevier; 2011. p. 127–61. The authors nowadays a comprehensive review of theoretical perspectives and recent research surrounding the bear on of chronic stress on the health of families caring for a child with ID.

    Affiliate  Google Scholar

11. Yamaki K, Hsieh K, Heller T. Wellness profile of aging family caregivers supporting adults with intellectual and developmental disabilities at home. Intellect Dev Disabil. 2009;47(6):425–35.

    Commodity  PubMed  Google Scholar

12. Al‐Krenawi A, Graham JR, Al Gharaibeh F. The touch on of intellectual disability, caregiver burden, family functioning, marital quality, and sense of coherence. Disabil Soc. 2011;26(2):139–fifty.

    Article  Google Scholar

13. Baker JK, Seltzer MM, Greenberg JS. Beliefs bug, maternal internalizing symptoms and family unit relations in families of adolescents and adults with fragile Ten syndrome. J Intellect Disabil Res. 2012;56(10):984–95.

    Article  PubMed Key  CAS  PubMed  Google Scholar

14. Hatton C, Emerson E, Graham H, Blacher J, Llewellyn G. Changes in family limerick and marital status in families with a young child with cognitive delay. J Appl Res Intellect. 2010;23(1):fourteen–26.

    Commodity  Google Scholar

15. Jones L, Bellis MA, Wood S, Hughes K, McCoy Due east, Eckley 50, et al. Prevalence and risk of violence against children with disabilities: a systematic review and meta-analysis of observational studies. Lancet. 2012;380(9845):899–907.

    Commodity  PubMed  Google Scholar

16. Morse RS, Rojahn J, Smith AC. Effects of behavior problems, family functioning, and family coping on parent stress in families with a child with Smith-Magenis syndrome. J Dev Phys Disabil. 2014;26(4):391–401.

    Commodity  Google Scholar

17. Risdal D, Singer GH. Marital adjustment in parents of children with disabilities: a historical review and meta-analysis. Res Pract Pers Sev Disabil. 2004;29(2):95–103.

    Article  Google Scholar

18. Urbano RC, Hodapp RM. Divorce in families of children with Down syndrome: a population-based study. Am J Ment Retard. 2007;112(4):261–74.

    Article  PubMed  Google Scholar

19. Llewellyn G, McConnell D, Gething L, Cant R, Kendig H. Wellness status and coping strategies among older parent-carers of adults with intellectual disabilities in an Australian sample. Res Dev Disabil. 2010;31(6):1176–86.

    Commodity  PubMed  Google Scholar

20. John A. Stress among mothers of children with intellectual disabilities in urban India: role of gender and maternal coping. J Appl Res Intellect. 2012;25:372–82.

    Article  Google Scholar

21. Kilic D, Gencdogan B, Bag B, Arıcan D. Psychosocial bug and marital adjustments of families caring for a child with intellectual disability. Sex Disabil. 2013;31(three):287–96.

    Article  Google Scholar

22. Cairns D, Brown J, Tolson D, Darbyshire C. Caring for a child with learning disabilities over a prolonged menstruum of time: an exploratory survey on the experiences and health of older parent carers living in Scotland. J Appl Res Intellect. 2014;27:471–80.

    Commodity  Google Scholar

23. Povee Grand, Roberts L, Bourke J, Leonard H. Family functioning in families with a child with Down syndrome: a mixed methods approach. J Intellect Disabil Res. 2012;56(10):961–73.

    Article  CAS  PubMed  Google Scholar

24. Hsiao CY. Family unit demands, social support and family functioning in Taiwanese families rearing children with Down syndrome. J Intellect Disabil Res. 2014;58(vi):549–59.

    Article  PubMed  Google Scholar

25. Samadi SA, McConkey R, Bunting B. Parental wellbeing of Iranian families with children who have developmental disabilities. Res Dev Disabil. 2014;35(vii):1639–47.

    Article  PubMed  Google Scholar

26. Hafeman DM, Schwartz S. Opening the black box: a motivation for the assessment of mediation. Int J Epidemiol. 2009. doi:10.1093/ije/dyn372.

    PubMed  Google Scholar

27. Baker BL, Blacher J, Crnic KA, Edelbrock C. Behavior bug and parenting stress in families of three-twelvemonth-one-time children with and without developmental delays. Am J Ment Retard. 2002;107(vi):433–44.

    Article  PubMed  Google Scholar

28. Baker BL, Blacher J, Olsson MB. Preschool children with and without developmental delay: behavior problems, parents' optimism and well‐being. J Intellect Disabil Res. 2005;49(viii):575–ninety.

    Article  CAS  PubMed  Google Scholar

29. Baker BL, McIntyre LL, Blacher J, Crnic Yard, Edelbrock C, Low C. Pre‐schoolhouse children with and without developmental filibuster: behavior problems and parenting stress over time. J Intellect Disabil Res. 2003;47(4‐v):217–30.

    Article  CAS  PubMed  Google Scholar

30. Eisenhower A, Blacher J, Baker BL. Mothers' perceived physical health during early and middle babyhood: relations with child developmental filibuster and behavior problems. Res Dev Disabil. 2013;34(3):1059–68.

    Article  PubMed Primal  PubMed  Google Scholar

31. Neece CL, Dark-green SA, Baker BL. Parenting stress and kid behavior problems: a transactional relationship across time. AJIDD Am J Intellect. 2012;117(1):48–66.

    Google Scholar

32. Peters-Scheffer N, Didden R, Korzilius H. Maternal stress predicted past characteristics of children with autism spectrum disorder and intellectual inability. Res Autism Spectr Dis. 2012;vi(two):696–706.

    Article  Google Scholar

33. Woodman AC, Mawdsley HP, Hauser-Cram P. Parenting stress and child behavior issues within families of children with developmental disabilities: transactional relations across 15 years. Res Dev Disabil. 2015;36:264–76.

    Article  Google Scholar

34. Orsmond GI, Seltzer MM, Krauss MW, Hong J. Beliefs bug in adults with mental retardation and maternal well-being: test of the management of effects. Am J Ment Retard. 2003;108(four):257–71.

    Article  PubMed  Google Scholar

35. Conger RD, Donnellan MB. An interactionist perspective on the socioeconomic context of human evolution. Annu Rev Psychol. 2007;58:175–99.

    Article  PubMed  Google Scholar

36. Stein A, Ramchandani P, Murray L. Impact of parental psychiatric disorder and physical disease. In: Rutter M, Bishop D, Pine S, Scott S, Stevenson J, Taylor E, Thapar A, editors. Rutter's kid and adolescent psychiatry. 5th ed. Oxford: Blackwell; 2008. p. 407–xx.

    Chapter  Google Scholar

37. Earth Health System (WHO). The world wellness report 2005. Make every mother and child count. Geneva: WHO; 2005. p. 2005.

    Google Scholar

38. Emerson East, McCulloch A, Graham H, Blacher J, Llwellyn GM, Hatton C. Socioeconomic circumstances and take a chance of psychiatric disorders amidst parents of children with early cerebral delay. AJIDD Am J Intellect. 2010;115(ane):30–42. A seminal population study demonstrating that the increased risk of psychological distress associated with caring for a child with ID is significantly macerated when socioeconomic disadvantage is adequately taken into account.

    Google Scholar

39. Emerson Due east, Robertson J, Wood J. Levels of psychological distress experienced by family carers of children and adolescents with intellectual disabilities in an urban conurbation. J Appl Res Intellect Disabil. 2004;17(2):77–84.

    Article  Google Scholar

40. Lupien SJ, Male monarch Southward, Meaney MJ, McEwen BS. Can poverty go under your pare? Basal cortisol levels and cognitive function in children from depression and high socioeconomic status. Dev Psychopathol. 2001;13(03):653–76.

    Article  Google Scholar

41. Park J, Turnbull AP, Turnbull 60 minutes. Impacts of poverty on quality of life in families of children with disabilities. Except Child. 2002;68(2):151–70.

    Google Scholar

42. Emerson E, Hatton C. Socio-economical position, poverty and family enquiry. In: Glidden LM, Seltzer MM, editors. On families: international review of research in mental retardation. New York: Academic; 2010. p. 97–129.

    Google Scholar

43. Emerson Due east. Agreement disabled childhoods: what tin we learn from population based studies? Kid Soc. 2012;26:214–22.

    Commodity  Google Scholar

44. Olsson MB, Hwang CP. Socioeconomic and psychological variables equally chance and protective factors for parental well‐beingness in families of children with intellectual disabilities. J Intellect Disabil Res. 2008;52(12):1102–xiii.

    Article  CAS  PubMed  Google Scholar

45. Greer FA, Grey IM, McClean B. Coping and positive perceptions in Irish mothers of children with intellectual disabilities. J Intellect Disabil. 2006;x(3):231–48.

    Article  PubMed  Google Scholar

46. Hastings RP, Taunt HM. Positive perceptions in families of children with developmental disabilities. Am J Ment Retard. 2002;107(2):116–27.

    Article  PubMed  Google Scholar

47. Kearney PM, Griffin T. Between joy and sorrow: beingness a parent of a child with developmental inability. J Adv Nurs. 2001;34(v):582–92.

    Article  CAS  PubMed  Google Scholar

48. Scorgie K, Sobsey D. Transformational outcomes associated with parenting children who accept disabilities. Ment Retard. 2000;38(three):195–206.

    Article  CAS  PubMed  Google Scholar

49. Ferguson PM. A place in the family: an historical interpretation of research on parental reactions to having a child with a inability. J Spec Educ. 2002;36(three):124–31.

    Article  Google Scholar

50. Landsman G. Mothers and models of disability. J Med Hum. 2005;26(2–3):121–39.

    Article  Google Scholar

51. Skinner D, Weisner TS. Sociocultural studies of families of children with intellectual disabilities. Ment Retard Dev Disabil Res. 2007;13(4):302–12.

    Article  Google Scholar

52. Voysey PM. A constant burden. Aldershot: Ashgate; 2006.

    Google Scholar

53. Breen LJ. Early on childhood service delivery for families living with disability: disabling families through problematic implicit credo. Aust J Early Child. 2009;34(iv):14–21.

    Google Scholar

54. McConnell D, Parakkal M, Savage A, Rempel G. Parent-mediated intervention: adherence and adverse effects. Disabil Rehabil. 2014. doi:ten.3109/09638288.2014.946157.

    PubMed  Google Scholar

55. McManus BM, Carle A, Acevedo-Garcia D, Ganz Grand, Hauser-Cram P, McCormick M. Modeling the social determinants of caregiver burden among families of children with developmental disabilities. Am J Intellect Dev Disabil. 2011;116(3):246–threescore.

    Article  PubMed  Google Scholar

56. Schwichtenberg A, Poehlmann J. Practical behavior assay: does intervention intensity chronicle to family stressors and maternal well-being? J Intellect Disabil Res. 2007;51(8):598–605.

    Article  CAS  PubMed  Google Scholar

57. Darling RB. Families against society: a written report of reactions to children with birth defects. Beverly Hills: Sage Publications; 1979.

    Google Scholar

58. Greenish SE. "What do you mean 'what's incorrect with her?'": stigma and the lives of families of children with disabilities. Soc Sci Med. 2003;57(viii):1361–74. The author combines personal feel and rigorous research to illuminate the impact of perceived stigma on emotional and social outcomes for families caring for a child with disability.

    Article  PubMed  Google Scholar

59. Jarrett CF, Mayes R, Llewellyn G. The touch of disablism on the psycho-emotional well-being of families with a child with impairment. Scand J Disabil Res. 2014;16(3):195–210.

    Article  Google Scholar

60. McKeever P, Miller KL. Mothering children who have disabilities: a Bourdieusian interpretation of maternal practices. Soc Sci Med. 2004;59(vi):1177–91.

    Commodity  PubMed  Google Scholar

61. Freedman RI, Litchfield LC, Warfield ME. Balancing work and family: perspectives of parents of children with developmental disabilities. Fam Soc. 1995;76(eight):507–fourteen.

    Google Scholar

62. Gordon Thou, Rosenman L, Cuskelly One thousand. Constrained labour: maternal employment when children take disabilities. J Appl Res Intellect. 2007;20(3):236–46.

    Article  Google Scholar

63. Warfield ME. Employment, parenting, and well-beingness among mothers of children with disabilities. Ment Retard. 2001;39(4):297–309.

    Article  CAS  PubMed  Google Scholar

64. Booth-LaForce C, Kelly JF. Childcare patterns and bug for families of preschool children with disabilities. Baby Young Child. 2004;17(ane):five–16.

    Article  Google Scholar

65. Grace R, Llewellyn G, Wedgwood N, Fenech Grand, McConnell D. Far from ideal everyday experiences of mothers and early childhood professionals negotiating an inclusive early childhood feel in the Australian context. Tiptop Early Child Spec. 2008;28(ane):xviii–thirty.

    Commodity  Google Scholar

66. Statistics Canada. Participation and activity limitation survey 2006: families of children with disabilities in Canada. No. Catalogue no. 89-628-X- No. 009. Ottawa: Social and Aboriginal Statistics Division; 2008.

    Google Scholar

67. Parish SL, Cloud JM. Financial well-being of young children with disabilities and their families. Soc Work. 2006;51(3):223–32.

    Commodity  PubMed  Google Scholar

68. McCann D, Balderdash R, Winzenberg T. The daily patterns of time use for parents of children with complex needs: a systematic review. J Child Health Care. 2012;sixteen(1):26–52.

    Article  PubMed  Google Scholar

69. Browne D, Rokeach A, Wiener J, Hoch J, Meunier J, Thurston S. Examining the family unit-level and economic impact of complex child disabilities as a part of child hyperactivity and service integration. J Dev Phys Disabil. 2013;25(2):181–201.

    Commodity  Google Scholar

70. Hodgetts South, Nicholas D, Zwaigenbaum L, McConnell D. Parents' and professionals' perceptions of family-centered care for children with autism spectrum disorder across service sectors. Soc Sci Med. 2013;96:138–46.

    Article  PubMed  Google Scholar

71. Glidden LM, Jobe BM. The longitudinal course of depression in adoptive and nascency mothers of children with intellectual disabilities. J Policy Pract Intellect Disabil. 2006;3(two):139–42.

    Article  Google Scholar

72. McConnell D, Savage A, Sobsey R, Uditsky B. Benefit-finding or finding benefit? The positive impact of children with disabilities. Disabil Soc. 2015. doi:10.1080/09687599.2014.984803. The authors provide strong support for the notion that parent reported benefits ought to be viewed equally genuine accounts of positive impact and transformation.

    Google Scholar

73. Stainton T, Besser H. The positive affect of children with an intellectual disability on the family. J Intellect Dev Disabil. 1998;23(i):57–70.

    Article  Google Scholar

74. Patterson JM. Integrating family resilience and family stress theory. J Mar Fam. 2002;64(2):349–60.

    Article  Google Scholar

75. Gallimore R, Bernheimer LP, Weisner TS. Family life is more than managing crunch: broadening the agenda of research on families adapting to childhood disability. In: Gallimore R, Bernheimer LP, Lucinda P, MacMillan DL, Speece DL, Vaughn S, editors. Developmental perspectives on children with high-incidence disabilities. Mahwah: Lawrence Erlbaum Assembly Publishers; 1999. p. 55–80.

    Google Scholar

76. Weisner TS, Matheson C, Coots J, Bernheimer LP. Sustainability of daily routines as a family upshot. In: Maynard AE, Martini MI, editors. Learning in cultural context: family unit peers and schoolhouse. New York: Springer; 2005. p. 41–73.

    Chapter  Google Scholar

77. Weisner TS. Well-existence, chaos, and culture: sustaining a meaningful daily routine. In: Evans GW, Wachs TD, editors. Anarchy and its influence on children's development: an ecological perspective. Washington: American Psychological Association; 2007. p. 211–24.

    Google Scholar

78. Weisner TS. Well-being and sustainability of the daily routine of life. In: Mathews G, Izquierdo C, editors. Pursuits of happiness: well-being in anthropological perspective. New York: Berghahn Press; 2009. p. 228–47.

    Google Scholar

79. Grant M, Ramcharan P, Flynn M. Resilience in families with children and developed members with intellectual disabilities: tracing elements of a psycho‐social model. J Appl Res Intellect. 2007;20(6):563–75.

    Article  Google Scholar

80. Peer JW, Hillman SB. The mediating touch of coping style on stress perception for parents of individuals with intellectual disabilities. J Intellect Disabil. 2012;16(1):45–59.

    Article  PubMed  Google Scholar

81. Smith LE, Seltzer MM, Tager-Flusberg H, Greenberg JS, Carter AS. A comparative analysis of well-being and coping amongst mothers of toddlers and mothers of adolescents with ASD. J Autism Dev Disord. 2008;38(5):876–89.

    Article  PubMed Central  PubMed  Google Scholar

82. McCubbin How-do-you-do, McCubbin MA. Typologies of resilient families: emerging roles of social class and ethnicity. Fam Relat. 1988;37(iii):247–54.

    Commodity  Google Scholar

83. Peer JW, Hillman SB. Stress and resilience for parents of children with intellectual and developmental disabilities: a review of key factors and recommendations for practitioners. JPPID. 2014;11(2):92–8.

    Google Scholar

84. Dunn ME, Burbine T, Bowers CA, Tantleff-Dunn S. Moderators of stress in parents of children with autism. Customs Ment Health J. 2001;37(1):39–52.

    Commodity  CAS  PubMed  Google Scholar

85. Horton TV, Wallander JL. Hope and social support every bit resilience factors against psychological distress of mothers who care for children with chronic physical conditions. Rehabil Psychol. 2001;46(four):382–99.

    Article  Google Scholar

86. Twoy R, Connolly PM, Novak JM. Coping strategies used by parents of children with autism. J Am Acad Nurse Pract. 2007;xix(5):251–60.

    Commodity  PubMed  Google Scholar

87. Singer GH, Ethridge BL, Aldana SI. Main and secondary furnishings of parenting and stress direction interventions for parents of children with developmental disabilities: a meta‐analysis. Ment Retard Dev Disabil Res. 2007;xiii(4):357–69.

    Article  Google Scholar

88. Ungar M. The social ecology of resilience: addressing contextual and cultural ambiguity of a nascent construct. Am J Orthopsychiatry. 2011. doi:10.1111/j.1939-0025.2010.01067.x.

    PubMed  Google Scholar

89. Masten AS, Hubbard JJ, Gest SD, Tellegen A, Garmezy N, Ramirez M. Competence in the context of arduousness: pathways to resilience and maladaptation from childhood to late adolescence. Dev Psychopathol. 1999;11(01):143–69.

    Article  CAS  PubMed  Google Scholar

90. Bernheimer LP, Weisner TS, Lowe ED. Impacts of children with troubles on working poor families: mixed-method and experimental evidence. Ment Retard. 2003;41(half-dozen):403–19.

    Article  PubMed  Google Scholar

91. McConnell D, Savage A, Breitkreuz R. Resilience in families raising children with disabilities and behavior problems. Res Dev Disabil. 2014;35(four):833–48.

    Commodity  PubMed  Google Scholar

92. Einfeld SL, Tonge BJ. The developmental behavior checklist: the evolution and validation of an instrument to assess behavioral and emotional disturbance in children and adolescents with mental retardation. J Autism Dev Disord. 1995;25(2):81–104.

    Article  CAS  PubMed  Google Scholar

93. Shilling Five, Morris C, Thompson‐Coon J, Ukoumunne O, Rogers M, Logan South. Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies. Dev Med Kid Neurol. 2013;55(7):602–9. This review provides a strong thematic analysis of benefits associated with parent-to-parent interventions.

    Article  PubMed  Google Scholar

94. Sartore G, Lagioia 5, Mildon R. Peer support interventions for parents and carers of children with circuitous needs. Cochrane. 2013. doi:10.1002/14651858.CD010618.

    Google Scholar

Download references

Compliance with Ethics Guidelines

Conflict of Interest

David McConnell and Bister Savage declare that they take no conflict of involvement.

Human and Brute Rights and Informed Consent

This commodity does not contain whatsoever studies with homo or animal subjects performed past any of the authors.

Author data

Affiliations

1. Family & Inability Studies Initiative, Faculty of Rehabilitation Medicine, University of Alberta, 8205-114St 2-64 Corbett Hall, Edmonton, AB, T6G 2G4, Canada

   David McConnell & Amber Savage

Corresponding author

Correspondence to David McConnell.

Additional information

This commodity is part of the Topical Collection on Intellectual Disability

Rights and permissions

Most this article

Cite this article

McConnell, D., Savage, A. Stress and Resilience Among Families Caring for Children with Intellectual Disability: Expanding the Research Agenda. Curr Dev Disord Rep 2, 100–109 (2015). https://doi.org/10.1007/s40474-015-0040-z

Download commendation

• Published: 04 February 2015

• Issue Date: June 2015

• DOI : https://doi.org/10.1007/s40474-015-0040-z

Keywords

• Intellectual disability
• Stress
• Resilience
• Ecocultural theory
• Family life

perrybeld1985.blogspot.com

Source: https://link.springer.com/article/10.1007/s40474-015-0040-z

Share this post