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Whose responsibility? Resilience infamilies of children with developmentaldisabilitiesKristy Muira & Iva Strnadováb

a Centre for Social Impact, University of New South Wales, Sydney,Australiab School of Education, University of New South Wales, Sydney,AustraliaPublished online: 04 Mar 2014.

To cite this article: Kristy Muir & Iva Strnadová (2014) Whose responsibility? Resilience infamilies of children with developmental disabilities, Disability & Society, 29:6, 922-937, DOI:10.1080/09687599.2014.886555

To link to this article: http://dx.doi.org/10.1080/09687599.2014.886555

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Whose responsibility? Resilience in families of children withdevelopmental disabilities

Kristy Muira* and Iva Strnadováb

aCentre for Social Impact, University of New South Wales, Sydney, Australia; bSchool ofEducation, University of New South Wales, Sydney, Australia

(Received 29 June 2012; final version received 9 September 2013)

Families with children with disabilities are at higher risk of stress, financialdisadvantage and breakdown. In recent decades, research and policy have shiftedfocus from these problems to a strengths-based approach, using concepts such asfamily resilience. By definition, resilience is the ability to cope in adversecircumstances, suggesting a reliance on the individual. If this is the case, then towhat extent does ‘family resilience’ place another burden of responsibility ontofamilies? Whose responsibility is family resilience? This paper begins to answerthis question using interviews with parents of children with developmentaldisabilities based in New South Wales, Australia.

Keywords: family resilience; children with developmental disabilities; individualcharacteristics and beliefs; families’ skills and practices; access to resources

Points of interest

� Families of children with disabilities are more often in danger of stress, familysplit and financial difficulties.

� Researchers have been increasingly focused on encouraging coping andresilience in these families.

� Resilience means coping in difficult life situations.� Who is responsible for whether families of children with developmental dis-abilities are coping well? Is it the families themselves or is it the responsibilityof the whole society?

� The question of ‘whose responsibility is resilience?’ is discussed usinginterviews from two studies.

Introduction

Families with children with disabilities are at higher risk of stress, financialdisadvantage and family breakdown than other families. They are more likely tohave a lower income, be socially isolated, stressed, separated or divorced and havepoorer mental health than parents whose children are without disability (Dobson andMiddleton 1998; Dobson, Middleton, and Beardsworth 2001; Bain 1998; Gardnerand Harmon 2002; Patterson 2002; Mauldon 1992). This culmination of risk factors

*Corresponding author. Email: k.muir@unsw.edu.au

© 2014 Taylor & Francis

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makes these families more vulnerable to breakdown. A New South Wales (NSW),Australia, survey found that almost one in four parents of children with a disabilityhad sought or would consider placing their child into care (Bain 1998). In this statealone, in 2009–2010, 72 families relinquished care of their child with a disability(NSW Parliament 2010) to the State Government.

Over the last couple of decades there has been a marked shift away fromresearch focusing on the stress and disadvantage faced by some families of childrenwith disabilities. This type of research has been highly criticised due to its negativeconnotations and overly intensive focus on psychosocial adaptation. Consequently,research, professional and policy foci moved toward more positive aspects, such asresilience, adaptation, coping strategies and transformation in these families(Summers et al. 2005; Knight 2012). While more positive, strength-based frame-works are useful, the shift in focus from one paradigm to another risks burdeningparents with responsibility for how they cope and potentially fails to recognise thebroader ecological context in which families live. As Knight recently articulated:

By concentrating on resilience, coping strategies and the psychological adjustment ofmothers and their ability to find meaning and ‘transformation’ in particular, researchersrisk losing sight of the political and social context in which caring takes place, and inso doing they effectively condone the marginalization of families. Instead, themicroscope is directed back on the mother, and her own strengths and weaknesses, asthe site of investigation. (2012, 5)

The extent to which this risk is mitigated or realised depends on how these conceptsare defined and applied by policy and practice and what this directly means forfamilies with children with developmental disabilities. This article takes one of theseconcepts – family resilience – and, drawing on psychological and sociologicalframeworks, deconstructs its definition and rhetorical function as it applies tofamilies with children with developmental disabilities. Using case studies from twodifferent research projects, the paper examines how family experiences and percep-tions relate to the core concepts and constructs of family resilience and it begins toanswer the question: whose responsibility is family resilience? This paper aims tomove beyond the dichotomy of individual versus collective responsibilities.

Defining family resilience

Resilience is having the ability to function effectively or positively ‘in adversecircumstances’ (Masten as quoted in Schoon 2006, 7). The study of resilienceemerged in the early 1970s. Since then, most resilience studies have focused on dis-advantaged children (Masten 1997; Guralnick 2000; Schoon 2006) in terms of tryingto understand why some children who have experienced adversity fare well, whileothers do not. In recent years the focus broadened to resilience of adults (Bartley2006) and families. Family resilience is a natural progression since much of theresilience literature is based within Bronfenbrenner’s (1979) ecological model,which acknowledges the role of families and communities in promoting resilience(Schoon 2006). Understanding family resilience goes beyond the individual tounderstand the group’s ability to function successfully in or after difficult periods.

Resilience in families of children with developmental disabilities has beenwidely discussed in the literature (Al-Krenawi, Graham, and Gharaibeh 2011; Bayat2007; Grant, Ramcharan, and Flynn 2007; Levine 2009; Lloyd and Hastings 2009;

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Retzleff 2007; Rolland and Walsh 2006). However, the concept of resilience stillcannot be aligned ‘to a single overarching theory’ (Grant, Ramcharan, and Flynn2007, 563). Resilience has been discussed within different models, most commonlywithin Antonovsky’s sense of coherence model (Grant, Ramcharan, and Flynn2007), the transactional model of stress and coping by Lazarus and Folkman (1984;King et al. 2009; Levine 2009), or the family resilience framework by Walsh (1998,2003; Bayat 2007; Levine 2009). There is no widely agreed definition on resilienceas it applies to families with children with developmental disabilities.

Previous research has applied diverse definitions, but there are common featuresdescribed in the disability-sector literature. These include parents being (authors’emphases): able to not just cope, but positively benefit from a challenging situation(Grant, Ramcharan, and Flynn 2007; Hawley and DeHaan 1996; King et al. 2009;Rolland and Walsh 2006); optimistic, hopeful, and/or able to find positive meaningsfrom a challenging situation (Bayat 2007; Cooley 1994 as quoted in King et al.2009; Gardner and Harmon 2002; Lloyd and Hastings 2009; Levine 2009); awareof their own strengths and weaknesses and able to recognise these (Levine 2009;Gardner and Harmon 2002; Patterson; 1991 as quoted in King 2009); confidentabout their own knowledge and decisions, and thus feeling some level of control oftheir lives (Levine 2009; Gardner and Harmon 2002); and fully aware of needingsupport networks and resources and being assertive enough to ask for these (Bayat2007; Gardner and Harmon 2002; Levine 2009).

These common features are based around agreed individual traits or familybehaviours; thus reinforcing Knight’s argument that the responsibility of resiliencerests primarily on families and individual parents. By definition, parents withresilience are ‘super parents’: they are positive, striving, able to attribute positivemeaning to problems; they have strong self-belief, control over their own lives andthe ability to build support networks. These expectations have the potential to bedisempowering for parents. With this in mind, we ask: is the concept of familyresilience really as simplistic as expecting individuals or family groups to have thetraits and personality to cope?

Unpacking the definition of family resilience

If the family resilience framework is explored, the definition is more complex.According to this literature, family resilience can be defined by three interrelatedsteps. As McCubbin et al. (1997) describe, firstly, the family faces adversity – aperceived ‘misfortune, trauma [or a] transitional event’; secondly, they draw on theirstrengths and resources (including services) to try and maintain their normal patternsof functioning; and, finally, they ‘bounce back’, recovering from the adversity,despite having to make some changes, or ‘adaptations’, to the way the family func-tions. This step-wise progression is a process and not just an outcome: ‘Family resil-ience describes the path a family follows’ (De Haan, Hawley, and Deal 2002, 276).Patterson reinforces the importance of understanding family resilience as a ‘processand not a trait’ (2002, 352 and 354). If family resilience is considered a process, itcan change over time, exist on a continuum of levels and be dependent on numerousfactors.

This process definition is equally applicable to families with and withoutchildren with a disability. They experience a crisis or adversity, they draw onstrengths and resources, and they adjust family functioning. Families with a child

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with a disability are likely to negotiate the resilience process by changing oradapting their family functioning on numerous occasions. For example, they mayface ‘adversity’ during the child’s birth, diagnosis or assessment, in accessing ser-vices and therapies, because of financial pressures and other potential stresses. Thesefamilies are likely to be constantly reacting to these situations and drawing onstrengths and resources to renegotiate routines and restabilise family functioning. Itis the ‘strengths and resources’ that are critical to the resilience process and it is herethat the disability and general literature intersect. To what extent are these ‘strengthsand resources’ based around individual and/or civic responsibilities?

The literature covers a range of protective factors or strengths and resources thathelp families recover, or experience resilience (Gardner and Harmon 2002; Morison,Bromfield, and Cameron 2003; Parker 2001; McCubbin et al. 1997; Patterson2002). In order to apply these strengths and resources to the experiences of families,they can be divided into three categories: individual characteristics, beliefs andattitudes; family skills and practices; and the resources families have access to anduse. These categories are briefly described below before the issue of responsibility isdiscussed.

Individual characteristics and beliefs

Individual characteristics and beliefs are important contributors to family strengths,according to researchers. This may include the ability to be flexible, to have hopeand emotional strength and to find meaning. The capacity to be flexible can assistfamilies to adjust and adapt to stressful events and change their functioning androutines accordingly (McCubbin et al. 1997; Parker 2001; Patterson 2002). Hope isconsidered essential with regard to building and strengthening family resilience(McCubbin et al. 1997; Morison, Bromfield, and Cameron 2003; Patterson 2002). Itis not important what families hope for, only that there is a possibility of achievingthe desire or goal (Morison, Bromfield, and Cameron 2003). With regard to a childwith a disability, hope could range from ‘hope for a cure, to hope for adequate careand treatment’ (2003, 129). Hope may need to be ‘reframed’ over time as other tran-sitions and events occur (2003, 129). Emotional strength is also considered to beimportant to assist families to work together in difficult times and to believe that thefamily will stay together, despite the distress (Morison, Bromfield, and Cameron2003). Finally, finding meaning in a crisis or being able to make some sense of anadverse situation can act as a protective factor for families (Gardner and Harmon2002; Morison, Bromfield, and Cameron 2003; Parker 2001). Each of these individ-ual characteristics and beliefs certainly place the responsibility for resilience ontoindividuals within families.

Skills and practices of families

Similarly, skills and practices of families also highlight either the individualstrengths or deficits of families and make resilience an individual responsibility.Research indicates that problem-solving, balancing the relationships, routines,financial management and openness all contribute to family strengths that willassist in the resilience process. Problem-solving involves managing interpersonalrelationships within the family so that tensions and conflicts can be solved. Thisrequires effective, open, truthful communication (Gardner and Harmon 2002;

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Morison, Bromfield, and Cameron 2003; Parker 2001) and an understanding of howto negotiate different family members’ temperaments (the way a person reacts andresponds) and how these temperaments interact (Smart and Sanson 2001). For fami-lies who have a child with challenging behaviour, the role of temperament and earlyintervention is especially important to assist families to manage tensions and solveproblems within the home (Smart and Sanson 2001).

Where families have young children it is considered to be especially importantto have ‘balanced interrelationships among family members’ so that the needs of allfamily members, including siblings, are met and the family can ‘resolve conflictsand reduce chronic strain’ (Gardner and Harmon 2002; McCubbin et al. 1997;Patterson 2002). Maintaining predictable and stable routines, such as meals togetherand bedtime, and acknowledging and celebrating special occasions, like birthdays,has also been found to help strengthen families. These rituals become particularlyimportant when families are in crisis because they create some stability (McCubbinet al. 1997; Patterson 2002). Finally, financial management is considered crucial forfamilies, particularly those with young children (McCubbin et al. 1997). Again, eachof these factors requires individual families to consider their skills, how they behaveand how their families function; the burden of responsibility falls directly ontofamilies.

Access to and use of resources

Access to and use of resources is the third category of ‘strengths and resources’ thatcontribute to a family’s resilience. It is here where the responsibilities start to shiftbeyond the family into the broader community. These resources are divided in theliterature between formal/informal social support and formal service use. Social sup-ports include participating in social and recreational activities in the community,both as individuals and together as a family (Gardner and Harmon 2002; McCubbinet al. 1997; Morison, Bromfield, and Cameron 2003; Patterson 2002). Maintainingrelationships with relatives, friends and others to keep up social interaction, avoidsocial isolation and ensure a network of people who can provide practical andemotional support when required can also protect families. Adequate supports havebeen also found to improve parenting practices (Peterson and Hawley 1998).Accessing government and community supports and having effective relationshipswith professionals is a further component of this protective factor (Bartley 2006;McCubbin et al. 1997; Patterson 2002).

Research has demonstrated that parents of children with developmentaldisabilities often first search for resources and practical help from professionals(such as counselling, support from special educators, therapies and/or respite) andguidance within the public service sector (as the system can be confusing forparents) (Vágnerová, Strnadová, and Krejčová 2009). Indeed, Levine (2009, 413)describes ‘resilient mothers’ as those who ‘deliberately call on their supportnetworks in order to assist them’.

While effective, intensive support services have been found to be ‘supportivethrough stressful periods and prevent family breakdown’ (NSW Ombudsman 2006,6), poor service delivery, difficulty accessing services, conflict with professionalsand other service-related problems can place added pressure on families who arealready under stress (NSW Ombudsman 2006; Patterson 2002). Thus accessing

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external resources, services and supports may assist families to strengthen theirresilience, but, if they are inadequate, they may also negatively affect families.

Therefore, according to the categories of traits, attitudes, behaviours andresources that define family resilience, much of the responsibility is directly placedonto individual family members. Contrarily, the provision of resources to supportthese families is a responsibility that falls outside the family. As Levine (2009, 415)argues, family resilience can only be enhanced if there are ‘adequate resourceswithin the system to facilitate the development of family capacities’. Of criticalimportance, therefore, is the context within which the three categories take place. AsGoodley (2005) recognised, resilience is contextualised; it is ‘not an individualattribute, but a product of contexts in which it can emerge’ (2005, 334). Contextmay be ‘borne out of the relationships between individuals, constructed throughshared collective meaning-making and created in numerous interdependent networksof social actors’ (2005, 335). This is a complicated aspect of resilience whenexamined within a family context, as the shared meaning-making is negotiated bothwithin family by its members, but also within extended networks, communities andsocial and political contexts. Case studies of families of children with developmentaldisabilities somewhat support the simplistic analysis across the three categories, but,like Goodley’s earlier findings, they also point to a more complex picture.

Case studies of family experiences and perceptions

Family experiences and perceptions are examined in this section in relation to thethree categories of protective and risk factors (individual characteristics and beliefs,family skills and practices and resources families have access to). Two differentresilience and well-being research projects are drawn together to examine thesefamily experiences and perceptions.

Muir, Tudball, and Robinson (2008) conducted research that aimed to increasethe understanding of family resilience in families where a child (zero to eight yearsold) has a disability and to inform service provision1. Eleven NSW parents (eightmothers only, three mothers and fathers) with children under eight years of age(mean age 3.7 years) with developmental disability were interviewed in March andApril 2007. Four of these families were living in urban areas, three in regional areasand four in rural areas and their children’s disabilities included cognitive impairment(n = 6), Down syndrome (n = 2), cerebral palsy (n = 4), and/or autism (n = 2). Twofamilies were sole parents, one was from an Aboriginal and Torres Strait Islanderbackground and three of the families’ only income source was government benefits(Muir, Tudball, and Robinson 2008).

Strnadová and Evans (2007); Evans and Strnadová (2008) investigated resiliencewith a focus on coping strategies in 14 mothers and one father of children withintellectual disabilities (five to 13 years of age; mean age 9.9 years) living in NSW2.Some of these children (n = 9) had a secondary diagnosis (cerebral palsy or autism).Ten mothers were married, two divorced, one separated, and one living in a de factopartnership.

Both sets of authors used similar approaches in their studies. The interviewswere conducted at place preferred by parents (mostly at their homes or in a separateroom of the school their child attended) and both used semi-structured interviewprotocols. These protocols were structured around the following similar themes,including: diagnosis of the child (time, process of acceptance); supports available

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and drawn on for parents (formal and informal); challenges faced by parents;sources of and levels of strength and hope; parents’ relationship and impact of thechild’s disability on other family relationships (e.g. parents as a couple, parents andfriends and parents and other siblings); plans for future; and areas that parents wouldapproach differently in hindsight.

Both sets of authors used thematic analysis of the transcribed interviews. In spiteof the above-stated similarities of the two studies, as these were set out to answerdifferent research questions and were designed and conducted independently acrossa two-year period, the paper does not draw conclusive findings about the overarch-ing experiences of families. Rather, it aims to use the family experiences and percep-tions as case studies to better understand how the conceptual definitions of familyresilience apply in a practical sense to some families. The findings below outline themeaning and practical applications of each category before discussing the implica-tions of these for the research question: whose responsibility is family resilience?

Individual characteristics and beliefs

The individual characteristics and beliefs that define family resilience, such as flexi-bility, hope and emotional strength and the capacity to find meaning in disability,were commonly discussed (Muir, Tudball, and Robinson 2008; Strnadová and Evans2007). Flexibility was evident in the discussions around family functioning and intheir capacity to react to changing daily demands and adjusting and adapting to ‘onething at a time’ (Strnadová and Evans 2007, 163). However the capacity to beflexible was in many cases dependent on external factors. For example, one motherreported being able to balance f lexibility within the home and work because of theflexibility provided by both her and her husband’s employer. Two other couples hadmuch less flexibility because the fathers’ employment situations (a miner and afarmer on a remote location) meant living away from the family for long periods oftime. Further, couple parents and parents with older children had increased flexibilitybecause there were more people to share caring responsibilities or react to changewhen required (Muir, Tudball, and Robinson 2008).

Families had goals or hopes that were indirectly or directly related to theirchildren, such as being able to access required services and supports and for them toget a sound education. Most families were hoping for happiness, for their families toremain strong, for the needs of individual family members to be met and for activi-ties, such as holidays (Muir, Tudball, and Robinson 2008; Strnadová and Evans2007). However, there was less hope around goals that relied on resources beyondthe control of families. For example, one family from Muir, Tudball, and Robinson’s(2008) study needed to move from a unit to a one-story house because they couldnot continue to carry their daughter with a disability up and down four flights ofstairs as she got older. With one income, a need for one parent to remain at home asa full-time carer and high costs associated with having a child with a disability, theycould not afford to move into a house and did not qualify for social housing.Furthermore, all parents were worried about the future and the opportunities andsupports (many of which they could not control) that would be available to themand their child (Muir, Tudball, and Robinson 2008; Strnadová and Evans 2007).

Families identified some emotional strengths and strategies that they believedmade their families durable, such as being cohesive, self-sufficient, optimistic, ‘in ittogether’ and ‘close and affectionate’. Parents also drew on the strengths of other

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family members and the benefits for their other children: ‘Our little boy, the way hecopes and everything I guess makes us strong too; he just loves her [his sister withdisability] to death’ (Muir, Tudball, and Robinson 2008, 39). However, not all fami-lies believed they were durable and, in some cases, partners did not always agreeabout the family’s hardiness. The mother of one child was adamant about the fam-ily’s durability, but her husband maintained ‘We’re not as strong as we’d like’. Onemother felt that her family was not ‘totally strong or tough’ and ‘there’re times wherewe could crumble as a family’. She felt that her children, who did not have disabili-ties, sometimes felt frustrated by their family’s situation: ‘I think some days they’dlike to forget they’ve got a brother [with disability] and just be a kid and go out andplay’ (Muir, Tudball, and Robinson 2008, 39).

Part of durability is believing that the family will remain together despite theproblems faced. Most of the mothers living in a couple appreciated the stability oftheir marriage, but some put this down to ‘luck’ rather than any particular qualitiesof the individuals or the relationships. As stated by one of the mothers: ‘I would saywe were lucky that we never separated the first two years. Definitely … under lotsof pressure. … I would say that we were very lucky that we survived’ (Evans andStrnadová 2008, 148). Mothers’ perceptions of family durability were alsoinfluenced by support provided by their partners/husbands. Some mothers felt thissupport was missing or was not of a nature they would have preferred:

… he was supportive in going to and being diagnosed and being there, but … [wewere] not really supporting each other at all because it was sort of like a dark tunnelwe were in … mine was what do we do about it and his was sort of leaving it up tome a little bit. (Evans and Strnadová 2008, unpublished data from the study)

Some mothers’ perceptions of durability as a family have changed over time. Asone of the interviewed mothers stated:

And the first seven years I wanted to pick up [my son] and run away every day. In thelast three to five years, I am happy to stay. So we are still married. It varied from dayto day. But on the whole … my level of expectation of him has shifted … I made theshift for my own mental health so that … so that lightened the load on everyone.’(Evans and Strnadová 2008, unpublished data from the study)

A few parents sought to maintain good health through physical activity. As oneof the mothers stated:

I really like to walk, so of a morning I always try and get up before everyone gets up.(…) That relaxes me, and gets me ready for the day. And I always feel that no matterhow stressed out I am at the end of the day I always feel better if I have been for thatwalk in the morning. Because I know that I have my time, that time for myself. (Evansand Strnadová 2008, 156–157).

When the time could be found, this was viewed as a highly positive way of maintain-ing good mental health and remaining resilient (Evans and Strnadová 2008, 156–157).

Finding meaning was important for some families, but not others, across thedataset. A small number found meaning through faith: ‘Faith, that’s been the biggestthing, I think, because without that … you sort of thought, “I can’t cope”’ (Muir,Tudball, and Robinson 2008, 45). While another mother believed that ‘God doesn’tgive us more than we can bear’, she was distressed and upset about how difficult theirfamilies’ lives have been since the birth of their daughter with a disability. Meaning

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was also found by ‘focus[ing] on the value and worth of a person’ (Muir, Tudball,and Robinson 2008, 45) and in strength and personality traits developed, theybelieved, as a result of having a child with a disability: ‘patience, humility and beinga better advocate for their child’ (Evans and Strnadová 2008, 151).

Skills and practices of families

Many families discussed their ability to solve problems. However, their capacity tosolve problems was often determined by whether they felt the problems were withinor outside their control. One mother explained that she and her partner ‘workthrough most problems, but sometimes there is no answer. Like, the problem, theconflict at the moment is, “how are we going to survive [financially]?”’ (Muir,Tudball, and Robinson 2008, 37). Indeed, the majority of the families interviewedreported that they cannot always afford the goods and services they feel are essentialfor their child with a disability to achieve a reasonable quality of life (Muir, Tudball,and Robinson 2008). Similarly, in Evans and Strnadová (2008) study a number ofmothers highlighted the limitations that financial restrictions placed on their abilityto access sufficient services to meet the needs of their child, which sometimes causea strain in the marriage: ‘… we fought a lot about money, because it so very expen-sive. I think we fought about money every week’ (unpublished data from the study).

Family routines and times together occurred through meals together, attendingchurch, going on picnics or holidays and doing other family-based activities. Whilefamilies reported benefits to spending time together, it was also acknowledged that itcould present challenges, conflict and/or stress. Behaviour problems, and a lack ofsupport to address these problems, limited the capacity of some families to interactsocially or attend certain community events. One couple, for example, often avoidedsocial events, or left early to minimise the risk of their daughter running away oracting aggressively with other children (Muir, Tudball, and Robinson 2008). A sin-gle mother avoided shopping or places that required quiet. For this family, ‘unless[child with the disability] can do it, we can’t do it’. Other families took part in activ-ities that would not have been suitable for the child with a disability by relying onthe care of one parent, respite and/or an older sibling (Evans and Strnadová 2008).

The capacity to undertake specific activities, even if the child with a disabilitycould not always take part, was considered important for maintaining other familialrelationships and individual needs. However, this was a significant practical chal-lenge for most families involved in both studies (Muir, Tudball, and Robinson 2008;Strnadová and Evans 2007). The hierarchy of meeting family members’ needstended to be in the following order: the child with a disability, siblings, individualparents (often the father first) and couples. Mothers generally only had their needsmet if they had partners who took on substantive, regular caring roles (e.g. to enablea mother to regularly exercise, rather than irregular ones, such as when the motherneeded a haircut). Addressing the needs of siblings was prioritised, but parents alsofound this to be a challenge because of the time required to care for their child witha disability. They all reported that their other children ‘miss out’ in terms of receiv-ing sufficient attention and having their needs met. Couples spent little or no timetogether as a couple because of problems finding or financing babysitters, gettingrespite or little money for entertainment or holidays. Mothers in couple relationshipsand sole parents were most likely to compromise their needs in an attempt to meetthe needs of other family members. As one mother pointed out: ‘I’ve always been

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the one who does everything with [our daughter with disability]’ (Muir, Tudball,and Robinson 2008, 37). Another mother noted: ‘He wasn’t really supportive; I hadto really support him. … you know, they really feel guilty like it is their fault’(Evans and Strnadová 2008, 150). The ungrounded but common feelings of guilt infathers were often compensated by spending a lot of time at work, which further leftmothers feeling lonely and isolated (Evans and Strnadová 2008, 150). However,even where fathers took on more substantive caring roles, which enabled mothersmore time to meet their own needs, external factors, such as needing one parent towork long hours for the income, impacted on relationships. For another family, themost effective way of ‘re-connecting as a family’ was going on holidays. But thistoo relied on sufficient finances (Muir, Tudball, and Robinson 2008). Furthermore,problems with accessing services and spending large amounts of money to purchasenon-governmental services lead parents to make considerable changes to theirfamily’s priorities (Evans and Strnadová 2008).

Access to and use of resources

All of the families were accessing various types of formal services: community,disability specific, medical, therapy, family and other government services. Familymembers reported varied experiences with service providers, from excellent to verypoor (Strnadová and Evans 2007; Evans and Strnadová 2008). In Strnadová andEvans’ (2007) study, the majority of participating mothers described an experiencewith service providers that caused them a great deal of stress. The most commonlydescribed obstacles were inflexibility, slowness and bureaucracy:

I’ve been waiting for some behaviour intervention for [child] and it’s been years and Igot a call through [government agency] … about two weeks ago and they were justphoning everyone that was on the list to see if they still needed the intervention, youknow they weren’t going to offer anything. (Strnadová and Evans 2007, 165)

Some mothers in both studies highlighted the need to fight for services for their chil-dren: ‘… you just learn to push and push until you get something … you have tofight for everything, everything’ (Strnadová and Evans 2007, 165). Similarly,another mother explained: ‘you’ve got to pull out all the straws, you’ve got to startplaying their game and threatening, and you shouldn’t have to’ (Muir, Tudball, andRobinson 2008, 52). A lack of respite services also increased stress experienced byfamilies: ‘now that he’s 13 he can’t go to that house anymore and he’s on the list foranother house but apparently it’s got a huge waiting list’ (Strnadová and Evans 2007,165). An absence of coordinated services proved to be a significant challengefor many of the families in Muir, Tudball, and Robinson’s (2008) study. For exam-ple, one mother explained: ‘you find you’re the one chasing them [service providers]up, you do feel very left alone, and again, unless you know what to ask for, youdon’t even know what to go looking for’ (2008, 61). Families also reported struggleswith service gaps (five families were on the waiting list for speech therapists; twofor physiotherapy appointments and a sole parent was on the waiting list to seewhether she was eligible for home care support; Muir, Tudball, and Robinson2008); arguments over eligibility (e.g. a mother being told her child with cerebralpalsy, cognitive impairment and blindness ‘was not disabled enough’ to receivesupported childcare) and varying standards of service quality (Muir, Tudball, and

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Robinson 2008). This was the case also in Evans and Strnadová (2008, 164–165)study, in which most of mothers pointed out a number of available, publicly fundedsupports missing from service providers: ‘… there’s not enough intervention servicesnot enough respite services, therapy all those psychologist, case workers it’s justlacking and you have to wait sometimes years to get support’.

Informal support from immediate and extended family members and/or friendswas a common source of support for most of the parents interviewed. This supportranged from emotional to practical support, such as financial assistance and child-care. (Muir, Tudball, and Robinson 2008; Strnadová and Evans 2007). All of thecouples in Muir, Tudball, and Robinson’s study and most of Strnadová and Evans’study cited each other as their main emotional support. They generally reportedfriends or extended family as the second most common supports and thirdly supportgroups, such as online or community-based disability-specific groups.

Only one interviewee in Muir, Tudball, and Robinson’s (2008) study could notidentify any informal supports. Despite this, nine of the families said they ‘veryoften’ or ‘sometimes’ need support that was not available. People who could provideinformal support had their own responsibilities, a lack of skills, were geographicallyremoved, were in poor health and/or feared providing support. Some intervieweeswere reluctant to ask friends to help with childcare for their child with a disabilitybecause of the extra demands of care, their own family responsibilities and lack ofawareness of how to treat and care for the child with a disability. Friends werehelpful emotional supports and babysitters for other children.

Where informal supports currently existed, there was some fear around thepermanence of that support. This was especially the case where grandparents wereageing and the physicality required in looking after kids with physical disabilitieswas becoming too demanding (Muir, Tudball, and Robinson 2008; Strnadová andEvans 2007). Families also worried about having to leave family and/or socialnetworks because of a need to move for their child’s needs or financial concerns.

Strnadová and Evans (2007) noted that some of the participants in their studydecided to utilise support networks they were developing. Building parentalnetworks was of special importance to some parents in regards to their child’s future.Two mothers spoke about collaborating with other mothers to purchase sharedhousing ‘for our kids’ futures’ (Strnadová and Evans 2007, 166).

Fathers and sole parents were most disconnected from informal emotional andsocial support. Even when their children were still very young, families developednumerous strategies to plan for their child’s future, such as making financialarrangements for their child and/or preparing siblings of their child to become carers(Strnadová and Evans 2007; Evans and Strnadová 2008).

Discussion

These case studies elicit interesting findings about some families’ practical applica-tion and perceptions compared with the conceptual definition of family resilience.They also begin to raise interesting answers to the central question: whose responsi-bility is family resilience? Is it an individual or collective responsibility? While theliterature is relatively easy to interpret in regard to responsibility, the case studiesdemonstrate more complexity.

The literature places responsibility onto individuals within families for individualcharacteristics and beliefs, such as hope, flexibility and the capacity to find meaning

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(for example, Bayat 2007; Gardner and Harmon 2002; Lloyd and Hastings 2009;Levine 2009). It also largely places responsibility onto individuals within familiesfor skills and practices, such as their ability to solve problems, establish and main-tain family routines, and meet and balance the needs of individual family members(for example, Levine 2009; Gardner and Harmon 2002). The case studies, however,do not support this picture. They show the influential interaction between individualswithin families and between individual and external factors. Resilience is neither anindividual nor a collective responsibility; rather, the case studies reinforce Goodley’sfinding that resilience is contextualised; it is ‘not an individual attribute, but aproduct of contexts in which it can emerge’ (2005, 334).

While the individual was clearly influential in relation to individual characteris-tics and skills and practices of families, the interaction between individuals andavailable, adequate external resources and the broader social and policy context wascritical in determining whether and how families enacted these individualcharacteristics and practices.

Interviewees spoke about being flexible; however, inflexible approaches outsidethe families’ control challenged this practice. An inability to access public housing,limited external financial support, limited or no available public services, a lack ofavailable or appropriate respite care and inflexibility of employers, for example,significantly affected a family’s ability to be flexibly responsive to adverse events.Similarly, household income affected what some families could hope for (such asthe family wishing to move from an apartment to a house without steps), the abilityto meet family members’ needs (such as being able to afford appropriate and timelyservices or equipment or being able to afford entertainment or leisure activities forother family members), solve particular problems and purchase services.

For the families interviewed, the ability to balance was contingent on finding theright resources or supports (time, finances and/or respite/care); the internal grief/guiltor other emotions at play; the energy available to invest in adult relationships (espe-cially with spouses) and other factors such as gender and relationship dynamics.While routines and spending time together as a family were generally perceived asimportant and practiced, health and disability-related issues coupled with insufficientexternal supports limited some families’ capacity to do so (e.g. finding a suitable,available and funded support worker who could attend a community event with thefamily). These case studies frequently demonstrate a gap between families’ individ-ual willingness and skills and the external factors and context required to undertakepractices that help protect family resilience.

The interviewees reinforce findings in the literature (for example, Bayat, 2007;Levine 2009) that demonstrate the critical role formal and informal resources andsupports play in families’ lives. Unsurprisingly, positive experiences with servicesand supports were considered enormously beneficial to families. However, the inter-viewees reported that it is not enough to simply have access to services. Familieswanted to be able to access appropriate, quality services within a reasonabletimeframe and needed assistance to navigate and coordinate the service system.

The interviewees relied heavily on their own resources. Family members andfriends played an important role in practically and emotionally supporting families.Most of the families interviewed who are well supported by extended family andfriends still reported requiring extra support. And, even if parents are well connectedwith families and friends, this did not always translate into them using these connec-tions for emotional or practical support. For example, an ageing grandparent may no

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longer have the physicality to care for an older grandchild with a physical disabilityor informal supports may be geographically isolated. Different members of thefamily may also have different levels and types of informal supports available tothem. Fathers and sole parents, for example, may have less emotional supportavailable than mothers in couple families. The case studies illustrate that access toand use of resources and supports for some families relies not just on the existenceof formal and informal resources and supports, but also on the appropriateness,availability and practicalities of what they can provide.

The research shows a complex picture of responsibility for family resilience.Scholars, policy-makers and practitioners must consider the family, community andsocietal context in considering the individual characteristics and beliefs, skills andpractices and resources and supports that together construct family resilience. Whilethese concepts may initially point to a heavy burden on individuals within families,families cannot be expected to be resilient without adequate supports and resourcesto draw on.

Limitations of the study

As the number of participants in both studies was relatively small, these findingscannot be generalised to all families with children with developmental disabilities.However, the experiences of the families in both studies are similar and they doprovide insight into how the concepts of family resilience relate to a small numberof families.

Other limitations of the study include age, gender, geography and disability type.There was a difference in the age range of children across the two studies. While inMuir, Tudball, and Robinson’s (2008) study mothers of children zero to eight yearsold participated, in Strnadová and Evans (2007); Evans and Strnadová (2008) thesewere mothers of children aged five to 13 years. Interestingly, at least for thesefamilies, the lived experiences were very similar despite the age differences.Although both studies were about ‘family resilience’, neither was very successful inengaging fathers in an interview. Furthermore, both studies were with parents livingin NSW, Australia. Future research should explore whether and how these findingsare relevant for a large number of fathers and for families in different situations indifferent countries. Finally, the researchers recognise that children with developmen-tal disabilities are not a homogeneous group; however, the sample is too small toseparate findings by disability type.

Conclusion

This research has examined family resilience as it applies to families with a childwith a developmental disability. More specifically, it deconstructed ‘familyresilience’ as a concept and used case studies to answer the question: whose respon-sibility is family resilience? The conceptual definition of family resilience suggeststhat most of the components or characteristics of family resilience directly or indi-rectly become the responsibility of individuals within families and/or the individualfamily unit, with the exception of accessing resources and supports external to thefamily. However, the case studies demonstrate that the answer to the researchquestion is more complex than dividing the constructs of resilience into individualor collective responsibilities. Many of the individual and family characteristics and

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traits rely not only on the family member, but are interdependent on and interactwith the external resources and supports families have access to, the broader socialand policy context and the extent to which these meet their needs.

While the findings have some limitations, they suggest that governments andsocieties need to be cognisant of not directly or indirectly implying that familyresilience is an individual responsibility. Family resilience is a tangled matrix ofinteracting and interdependent individual, family, community and societal factors. Iffamilies are to demonstrate resilience, then the broader context must be acknowl-edged and civic responsibility must be taken for adequate resources, supports andservices.

AcknowledgementsThe authors would like to acknowledge and express their gratitude to all parents whoparticipated in the interviews and were willing to share their life experiences in order to helpother families. They would also like to acknowledge and thank their co-authors of theoriginal research projects on which this paper has drawn.

Notes1. This research project was commissioned by the Australian Government Disability Policy

and Research Working Group and approved by the UNSW Ethics Committee.2. This research project was commissioned within the research project ‘Analysis of Stress

Factors within Families of Children with Disabilities Living with One Parent’, approvedby the Grant Agency of the Czech Republic, GA ČR 406/06/0779.

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