Full text of DOI:10.1046/j.1468-3148.2000.00035.x

Journal of Applied Research in Intellectual Disabilities 2000, 13, 256±275
Differentiated Coping Strategies in
Families with Children or Adults with
Intellectual Disabilities: the Relevance of
Gender, Family Composition and the Life
Span
G. Grant and B. Whittell
School of Nursing and Midwifery, University of Shef®eld, Samuel Fox House, Northern
General Hospital, Herries Road, Shef®eld S5 7AU, UK
Paper accepted September 2000
The present paper considers the coping strategies of families with children and adults with
intellectual disabilities. It is argued that the literature on coping and resilience in families has
often been overlooked in favour of de®cit models of family functioning. The present study
was designed to provide a further test of the transactional model of coping, but more espe-
cially, to explore which problem-solving, cognitive and stress reduction coping strategies
family members found useful. Based on the use of a coping inventory Carers Assessment of
Managing Index (CAMI), coping is shown to be differentiated according to gender, life stage
and family structure. Implications for continuing research into family care are considered and
some questions are raised about family support.
Introduction
Family caregiving has long been informed by an understanding of stress as a central
part of the caregiver experience, re¯ecting the continuing in¯uence of a de®cit model
that implies a pathology within family functioning. Indeed, a recent review of family
adjustment research over a 20-year period concluded that, although the language of
stress, burden and `disabled families' appears to have declined, there has been rela-
tively little evidence of a concomitant increase in the language of family well-being,
caregiving satisfaction and resilience (Helff & Glidden 1998). However, there is a grow-
ing body of literature emphasizing family strengths. This literature acknowledges that
families can cope extremely well under conditions of apparent adversity (Hawley &
DeHaan 1996; Schumacher et al. 1998). These studies suggest that families frequently
`bounce back' from challenging situations, and that they may have many kinds of
resources for coping which mediate the experience of day-to-day stresses associated
with caregiving (Quine & Pahl 1991). Resilience in coping has also been described in
families whose parents have intellectual disabilities (Booth & Booth 1998). Such ®nd-
ings suggest that methods of assessment based on a risk paradigm might ignore differ-
ent kinds of family strengths like personal knowledge and expertise, support networks,
and coping strategies and resources.
Evidence from family research in dementia care, intellectual disability, chronic illness
and terminal illness contexts suggests that satisfactions and stresses among family
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carers typically coexist in the midst of enduring and often challenging home circum-
stances (Nolan et al. 1996; Folkman 1997; Grant et al. 1998; Wilson et al. 1998). It seems
that the realities with which families are faced are more complex and subtle than at
®rst appears. How families manage their caring in the face of both stresses and caregiv-
ing satisfactions is still largely to be described, let alone explained. Folkman (1997) con-
cluded that we need to know more about the coping processes which trigger the
search for positive psychological states, and the intensity and duration of such states
necessary to help sustain individuals in coping with everyday challenges.
Beresford's (1994) research provided a refreshing antidote to stress-focused family
care research in identifying a range of caregiving satisfactions in families with disabled
children, amongst them being those intrinsic to caregiving itself, those related to seeing
their child making `small' achievements, especially when these contradict the prog-
noses of doctors, the ability to enjoy a `normal' everyday life and `drawing strength'
from the expectation of decreased demands in cases where prognoses were good.
Accounting for and conceptualizing caregiving satisfactions associated with family
caregiving are complicated by the fact that these satisfactions seem to be related to dis-
positions (i.e. carer's beliefs and values), interpersonal factors (i.e. reciprocities in care-
giving) and outcomes (i.e. perceptions of improvement) (Grant & Nolan 1993; Grant
et al. 1998). As the above authors have argued, caregiving satisfactions can be both pre-
dictors or mediating factors as well as outcomes of successful coping.
Meanwhile, Wikler's (1986) earlier work with families has shown the importance of
accounting for key transition points when families are drawn into making normative
judgements about their lives compared to other families; for example, at the onset of
adolescence or adulthood when perceived stresses seem to be more evident. However,
there has been rather less emphasis in the literature about the coping strategies families
use to deal with these perceived life transition stresses and how effective these strate-
gies are.
Empirical tests of stress and coping among families of children with intellectual dis-
abilities (Orr et al. 1991; Quine & Pahl 1991) have shown the utility of the transactional
model of coping and stress propounded by Lazarus & Folkman (1984). In this model,
stress is said to occur when there is a perceived mismatch between the nature of a
demand or set of circumstances, and the person's ability to respond by bringing into
play internal and external resources for coping. Although there are often dif®culties in
being certain about the causal ordering of factors in the appraisal process in this model
(Edwards & Cooper 1988), it can be viewed as a useful problem-solving device for
exploring the empirical world.
Scanning the very extensive literature on resilience and stress models of family care-
giving, ®ve general points can be made about how families seem to cope that are of
relevance to the present study:
. Individuals usually access more than one coping strategy in managing challenging
events and circumstances, and these can involve behavioural as well as cognitive
approaches (Nolan et al. 1995).
. The developmental stages of coping need to be better understood; for example, an
initial response involving escape or withdrawal might be a necessary ®rst step towards
solving the problem (Brown 1993).
. Coping may be liberating, but it can also be stressful, although the mediating effects
of stress on coping and coping on stress are still not fully understood (Quine & Pahl
1991; Folkman 1997).
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. There have been repeated calls for research about how families manage as they go
through life-cycle transitions (Baxter et al. 1995; Floyd & Costigan 1997) where the
course of disability, changes in support networks, family life-stage and service transi-
tions may all bear upon coping resources and coping strategies.
. Making sense out of what are often `non-normative' conditions frequently seems to
lie at the heart of people's best efforts to cope (Lazarus 1993; Tobin 1996), but little is
known about the gendered basis of such coping.
Judging from the experiences of services which families of children or adults with
intellectual disabilities report, it would seem that many are left to manage their coping
without the bene®t of an effective individual plan (McGrath 1991; Felce et al. 1998,
Chapter 4). Furthermore, their accounts of professional assessment practice suggest
that a family's capacity to continue managing things is frequently overlooked (Robin-
son & Williams 1999). This would suggest a failure on the part of professionals to
acknowledge, let alone to nurture, successful coping by families over the life course, or
at least at important transition points in their lives.
The present study gives a description of the use of a coping inventory amongst a
purposive sample of families supporting children or adults with intellectual disabilities
in an attempt to understand the differentiated nature of coping. For the purpose of this
paper, attention is focused on self-assessed successful coping by family carers, and its
relationship to gender, life stage and family composition.
Subjects and methods
Theoretical background and approach
Recognizing, understanding and assessing the diversity of experiences which families
report in their everyday caregiving is a dif®cult and complex task. Therefore, the pre-
sent study required a methodological approach that took account of this complexity,
and allowed appropriate analysis of ®rst-hand accounts from family carers and their
care managers about the everyday realities of caring and `coping'. The framework for
this study was based around a transactional model of coping, originally proposed by
Lazarus & Folkman (1984). This lays an emphasis on the cognitive appraisals people
bring to situations, and on the secondary and consequent appraisals made of the cop-
ing resources which they can call upon to deal with these circumstances. A growing
body of UK and US research supports the validity of this stress-coping approach as
probably the best way of seeking to represent the lived realities of families and in pro-
viding a more holistic picture of family care-giving (Orr et al. 1991; Quine & Pahl 1991;
Sloper et al. 1991; Nolan et al. 1996). A case study approach was selected to comple-
ment the transactional framework of the present study, and this included in-depth
interviewing of family carers and their care managers. The methodological approach
generated much qualitative data which the present authors ®rst of all analysed inde-
pendently and then jointly.
Location and study sample
Fieldwork was carried out in two of the unitary authorities in Wales: one with a long-
established `case management' approach to front-line service delivery; and one where
local government re-organization was creating some re-thinking of the best practice
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model. The research involved one community learning disability team in the ®rst uni-
tary authority and three (a children with disabilities team and two adult teams) in the
second. The localities re¯ected a mix of rural and semi-rural communities.
A sampling frame was drawn up that included 10 cases in the ®rst unitary authority
and 20 in the second. Cases were selected so as to represent different stages of the
family life course and incorporate various service transition points. An attempt was
also made to include cases re¯ecting a reliance on traditional (segregated), alternative
(community integrated) or no services, respectively, typifying local patterns of service
use.
A mix of strati®ed and purposive sampling was used to generate the target number
of families (30). This was achieved with the assistance of care managers and other
front-line workers by applying a random selection process to their active case ®les
until there were suf®cient cases within each category. An attempt was also made to
ensure a spread of cases from different care managers. Bilingual letters introducing the
study and inviting selected families to participate were sent out through care man-
agers. Replies from families were directed to care managers and from there to the
research team.
The achieved sample over the three ®eldwork sites is shown in Table 1.
Seventeen families were headed by couples and the remaining 10 were lone carer
families, nine of whom were women. Eight of the lone carers were single or widowed
parents. One of the remaining two carers was a sister and the other a cousin.
Interview schedule design
An interview schedule was designed for use with family carers. This covered themes
about caregiving histories, coping strategies and their relationship to stressors, general
health questions, and carers' experiences with support services and care management.
Also included were adaptations of two assessment instruments described elsewhere
(Nolan et al. 1996, 1998) for tapping into people's coping strategies (CAMI) and per-
ceived stressors Carers Assessment of Dif®culties Index (CADI). The interview sche-
dule was piloted before use in the main study. The quantitative data reported in the
present paper derive from the adapted CAMI which comprised 37 statements about
coping which ®rst asked if each coping strategy was used at all, and secondly, if it
worked well for them. These coping statements were presented to family members on
cards which allowed them to be sorted easily into these different categories. This also
Table 1 Achieved sample over the three ®eldwork sites
Family type
Number
Caring for a young child aged 0±4 years
Caring for child/young adult aged 5±19 years
Caring for adult relative aged 20±34 years
Caring for adult relative aged 35±49 years
Caring for adult relative aged r50 years
Total
6
6
5
5
5
27
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placed an element of control into the hands of families during the interview. The cards
frequently prompted families to tell stories of how they went about their coping and
caring.
Fieldwork
The interviews with family carers were semi-structured. These were tape-recorded
with permission and subsequently transcribed. Since it was the intention to interview
all family carers involved in caring for the person concerned, a total of 41 people (26
females and 15 males) were interviewed from the sample of 27 families. Two or more
visits were necessary to complete the interviews with some carers resulting in over 60
interview visits. A Welsh-speaking interviewer was recruited to interview four family
carers who wished to be interviewed in Welsh. A fourth interviewer was recruited to
help complete the remaining interviews.
Interviews were tape-recorded, transcribed and a hard copy made for each of the
authors for content analysis purposes. Supplementary notes were made after interview
visits in order to record thoughts, impressions and other information that appeared
relevant for the purpose of the present study. A `project progress' diary was also main-
tained throughout the project planning and ®eldwork stages.
All names in the descriptions that follow below have been anonymized.
Results
How families evaluate their strategies for coping
Broad brush ®gures are presented in order to illustrate the diversity of coping strate-
gies used by families, and to provide some indications of how useful different strate-
gies were for managing events/problem-solving (Table 2), managing meanings (Table
3) and managing/alleviating stress (Table 4). The percentages do not necessarily sum
to 100% because some family carers were occasionally unsure of how to comment on
individual coping strategies.
Managing events/problem solving
It is generally considered that these strategies are most effective when events and chal-
lenges are amenable to change and can be accomplished by the person. Table 2 shows
that six out of the 14 strategies listed were used and found helpful by over 75% of the
sample. Seven out of the remaining strategies were still used by over 60% of the sam-
ple. Even the least-used strategy (i.e. getting as much help as you can from your
family) was used by over four out of 10 carers.
The most frequently used and helpful problem-solving strategies appear to be those
which embody ®ve elements:
. the ability to build on personal experience and expertise;
. the value of having a regular routine or structure for coping;
. having access to a trusting person or con®dant(e) to talk things over with;
. being able to set priorities; and
. being able to choose from a repertoire of coping strategies.
The most widespread and useful strategy (i.e. relying on one's own experience and
expertise) reinforces some long-held views that families are their own experts in pos-
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sessing a `particularistic knowledge' about their own circumstances and repertoires for
dealing with things (Nolan et al. 1996). Nevertheless, very little is known about either
how families acquire this expertise, or how front-line professional workers recognize
and tap into it. Sometimes, it was only by talking to families that they themselves
began to recognize what they did know about successful coping. Many years ago, Bay-
ley (1973) noted that having a structure or routine for coping was an important ingre-
dient in managing at home and this remains the case, irrespective of family
composition.
Having access to a trusting person or con®dant(e) appeared to be vital to carers in
reaf®rming their identities, and strengthening their resolve and focus. For single parent
or lone carers, or those who were caring with partners who did not necessarily share
their values or commitment, this could be problematic. Once again, this underlines the
importance of professional workers maintaining empathetic and trusting relationships
with families (Grant et al. 1994), and the value of active and re¯ective listening skills in
understanding a family's needs.
Being able to set priorities and concentrate on these was another prevalent and use-
ful strategy for coping. Household, occupational and social demands upon families
usually required quite a lot of organization. Decision-making capacity could be taxed
when families were faced with apparently irreconcilable demands. This raises some
crucial questions for professionals about frameworks for assessing carers' needs, and
the importance of tapping into those domains of interest which impinge on the differ-
ent roles carers play within the family and community. The present ®ndings reinforce
the view that families should be supported in identifying, clarifying and prioritizing
needs and aspirations for themselves (Dunst et al. 1993).
A signi®cant minority of carers (17±27%) did not use the remaining strategies at all.
The main reason was because the strategy was not needed or was seen as inappropri-
ate; for example, altering the home environment or keeping the person as active as pos-
sible were not relevant in some cases. However, in one case (i.e. getting as much
practical help as possible from the family), there was something much more proble-
matic involved. This was the least-used and the least helpful of all the problem-solving
strategies, and even when invoked, one quarter of carers claimed that the help pro-
vided was not really helpful. For all that has been said so far about the positive attribu-
tions of caregiving, there is a warning sign here about the tenuous nature of some
caregiving arrangements in families.
Lack of support from other family members was identi®ed as a source of stress on
the CADI checklist by 11 of the family carers interviewed. With one young couple, this
was also the cause of friction and arguments between them:
`It puts a strain on our relationship with the lack of help that we get from family
sometimes, and me and Sarah start arguing about it. Like my parents not doing as
much, you know, so sometimes it's brought up in arguments . . . '
John, the husband, went on to explain that they would really appreciate family
members offering to look after their young son, to baby-sit or to take him out instead of
them having to ask, and that this lack of help was not just from his side of the family
either:
`It's not just my mum, really ± it's Sarah's dad, and sometimes Sarah's mum and Sar-
ah's sister, you know.'
Not wanting to have to ask other family members for help came over as a strong fea-
ture in some interviews. The viewpoint that carers did not want to `burden' other
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family members with caring responsibilities was also expressed, especially amongst
older carers:
`We think they have a life to live and we don't want to burden them.'
Managing meanings
Where problem-solving strategies do not work or are perceived to be irrelevant, carers
may turn to cognitive coping, i.e. in order to cope with events or circumstances which
are challenging by de®nition, carers seek to change what these mean to them. As seen
from Table 3, these strategies were much in evidence. Ten out of the 14 strategies listed
were used and found to be helpful by over 75% of the carer sample, suggesting that
this sample depends more on cognitive coping as a successful strategy for managing
things than family carers of elderly people (Nolan et al. 1996).
The two most helpful strategies for coping in this category were realizing that there
is always someone worse off than yourself (91%) and that the person you care for is
not to blame (91%). Almost without exception, family members readily saw that
demands attributable to the condition of intellectual disability could not be `blamed'
on anyone. More dif®cult was when behaviours could perhaps be linked to the per-
son's volition. With 88% of carers believing in themselves and in their ability to handle
the situation, there was a strong emphasis on maintaining a high locus of control in
these circumstances.
This sense of control could also be helped, as seen above, when carers had access to
reference groups with whom direct comparisons could be made. Although many carers
did not belong to Mencap or other voluntary groups, they usually knew other families
through services, and therefore, were in a position to draw such comparisons. Some
families also proffered comments that their ®rst port of call should they need help
would be other families. This suggests that other families not only help to keep things
in perspective, but that they represent a potential reservoir of practical help and advice,
as evidenced by the following comments from a young mother:
`They [services] told us about Disability Living Allowance, but it's little things that
mums share together but no one tells you . . . '
The use of positive comparisons has been described before (Brown 1993) and
appears to be linked to seeing the positive things in each situation (81%). Termed by
Brown (1993) `positive illusions', these strategies would appear to work well as long as
they do not become too detached from reality. Professional support is likely to have an
important role in helping some families to maintain a healthy distinction between rea-
lity, illusion and delusion.
Short-term strategies like the use of humour and taking life one day at a time were
each mentioned by at least 80% of carers as useful coping devices. However, a more
enduring factor in carers' repertoires was the facility claimed by 80% to recognize that
things are better now than they used to be. Disclosure to parents of suspected or actual
handicap in a child before or after birth is generally accepted as a very stressful and
traumatizing experience, but research suggests that the subsequent lived experience is
not quite so dif®cult to contend with, not least because of the contributions children
with severe intellectual disabilities can make to family life (Baker et al. 1997). Other
life-cycle factors come into play here, as will be seen later. It is perhaps not so surpris-
ing then that the capacity to make favourable comparisons with the past should be
quite so prevalent and useful.
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Stoicism was evident, with over 75% of carers claiming to accept the situation as it
was, or gritting their teeth and just getting on with things as effective ways of coping.
Other cognitive coping strategies were neither as popular nor as useful; for example,
keeping a tight control on one's emotions or daydreaming. Ignoring the problem and
hoping it would disappear was rejected by everyone. The issue of drawing on strong
personal or religious beliefs drew a much more mixed response: it was found helpful,
unhelpful and not used in almost equal measure.
Managing/alleviating stress
Circumstances can arise when neither problem solving nor cognitive reappraisal work,
and therefore, carers have to rely on dealing with the consequences of challenges and
associated stresses. Table 4 shows that only two out of the nine strategies listed were
used and found to be helpful by 75% or more of the sample, i.e. keeping a little free
time to yourself (83%) and taking your mind off things for a while through engaging
in passive leisure pursuits (76%).
All the other strategies raised questions in people's minds about what worked or
whether these approaches were relevant to their circumstances. The very limited use of
self-help groups or relaxation techniques, supported by evidence from interviews, sug-
gests that this is more an issue about the availability of these options than their rele-
vance, although only about one half of those who presently used either found these
helpful. Venting emotions in one way or another (e.g. letting off steam or having a
good cry) seemed to work for between 40% and 50% of the sample, but these strategies
clearly did not work or were not used by the remainder. Only 56% of the sample said
that they managed by maintaining interests outside caring, suggesting that quite large
numbers of carers may be preoccupied with or engulfed by the demands of everyday
caregiving as other authors have also described (Todd & Shearn 1996; Walden et al.
2000).
Respite services are still patchy at best in their availability, and in their capacity to
target those individuals and families most in need. Until this issue is addressed, it
seems likely that many families will be left to deal with the consequences of unresolved
dif®culties, and in the process, remain reliant on stress reduction techniques which are
of dubious value to them.
Coping strategies and gender
Despite the huge literature on informal care, there are scant details about how men
compare with women in terms of everyday coping. The principal reason for this in
intellectual disability studies of family care is that accounts about caregiving have been
drawn mainly from mothers. The present study was an exception to this rule since the
aim was to interview all adults in the family household. Only one man in the sample
declined to be interviewed because he did not identify himself as being a carer. How-
ever, many of the men interviewed clearly welcomed the opportunity to talk about
their experiences of caring and their strategies for coping. Their comments provided
some valuable insights into gender differences in coping strategies.
Women identi®ed more useful coping strategies from the 37 coping strategies listed
in the CAMI than men, although not markedly more (mean of 25 as opposed to 22).
There were no gender differences in relation to the mean number of unhelpful strate-
gies experienced (4.5 for women as opposed to 4.7 for men) or strategies not used (7.1
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for women and 7 for men). However, 12 coping strategies seemed to demarcate people
on gender lines. These are shown in Table 5. The items are listed so as to show the
more apparent differences ®rst.
Contrary to received wisdom, women seem to lean more to instrumental problem
solving coping than men, as evidenced by their focus on fully exploiting their coping
repertoires, their ability to establish and concentrate on priorities, and their 100% use
of their experience and expertise. By contrast, men appear to be much more equivocal
in their use of such strategies. In some respects, this appears to re¯ect their status as
`secondary' carers where they either defer to the experience and expertise of their
female spouses or partners, or merely opt out. One young husband, Owen, explained
why the majority of caring was left to his wife, Diane:
`You have to understand that she can go for a whole week without seeing me, even
though I come home every night, because I work sometimes 12 h a day. I am away at
7.30 in the morning . . . It's a long day, so my little girl is fast asleep when I come
home . . . I haven't done for a while, but it has been known to go from a Sunday night
to Friday afternoon that I don't see her, so I just don't have that much to do with her.
It's just the way it is.'
Because of less time spent caring, some men like Owen feel less `experienced' in
their caring roles, this being re¯ected in their different coping strategies. However,
within the present sample, there were some male carers ± mostly fathers ± who saw
themselves as equally sharing the role of carer with mothers. They clearly saw this role
as enjoyable and satisfying, although some still deferred to the `expertise' of their part-
ner. One new step-father described how he learned and drew strength from his wife's
prior knowledge and experience of caring:
`She has been doing this a long time before I came, so I have all my strength and all
my knowledge from her . . . I have admired the way she seems to have taken it all in
her stride . . . She is the one that I have learnt from about them. It is only from her that
I have learnt about their dif®culties and how to deal with different situations that
come up . . . '
The women in the sample appear to display much greater self-belief than the men,
as evidenced by the differences in their self-con®dence and self-assessed ability to han-
dle situations. Once again, contrary to popular stereotype, more women than men
found keeping their feelings and emotions under close control a useful strategy. One
possible reason for this is that emotional displays in front of others, especially the per-
son one is tending, are regarded not only as a sign of weakness but something of a
`lost battle' as one carer put it. With men, especially fathers, generally playing second
®ddle in day-to-day practical and personal caring terms, they could perhaps afford to
maintain greater emotional distance and ®nd other ways of coping. One of the ways
this was accomplished was by maintaining interests outside of caring, this being some-
thing that they accomplished more successfully than women, typically through
employment.
Women drew on personal and religious beliefs to a much greater extent than men,
but as will be seen below, this appeared to be more a function of differences in age
group.
The ®ndings, especially for women, suggest some support for Lazarus's (1993) con-
clusion that it is the ability to sustain serviceable meanings that is the key to under-
standing how people cope in the face of apparent adversity. The ®ndings for men
suggest that some may be ®nding it harder than women to derive meaningfulness
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from what is happening around them. The following, admittedly extreme, example
illustrates this point.
Sheila and Phil had been looking after Colin, Sheila's middle-aged brother, for some
years. Colin's health had deteriorated markedly and he had also recently been diag-
nosed as having Alzheimer's disease. Phil found this extremely dif®cult to deal with,
his attitudes and expressed emotion varying with the different explanations he was
still wrestling with as to the reasons for Colin's challenging behaviours. This suddenly
erupted with some force when ®elding a question about whether or not his wife was
too soft-hearted in dealing with Colin:
`Well, she's sitting here watching the TV. She likes watching Coronation Street, and
then he'll say ``Sheila'' and she'll get up and go and blasted see him. Make him wait ±
I'd make him wait. I wouldn't get up and see him. She'll say, ``Oh, might as well go,''
and she'll just go and see him, but if I was watching telly and wanted to watch Corona-
tion Street, he'd blasted have to wait till after Coronation Street, but Sheila gets up and
she runs around after him. She's too daft.'
On the whole, Phil seemed to adopt a rather conspiratorial position in explaining
Colin's behaviour whereas Sheila was inclined to be much more open-minded and
accepting.
The ®ndings also point to possible dangers of over-emphasizing gender differences.
Most couples enjoyed close interpersonal relationships where roles and tasks were
jointly owned or split between them by agreement. Some couples insisted on joint
interviews as if to emphasize this point. A `sharing-caring together' approach is illu-
strated in the following comments from an older couple:
`I take responsibility most of the time and my son is used to me doing things for
him. Having said that, my husband does help out with him. You see, I don't drive for
a start so any journeys my husband has to take us . . . As I say, I do have a break occa-
sionally for a couple of days now and again, and he will take over. I suppose it's a
team effort in a way, what one can't do, the other will . . . We get on quite well together
and we're able to, well, we do talk over things regularly . . . We are mostly a husband
a wife team, we talk things over together and discuss things together.'
The ®ndings suggest that differences in coping strategies which appear to be gender-
based need to be more closely examined, including their relationship to blood and gen-
erational ties, because these are implicated in understanding hierarchies of obligations
and responsibilities towards family members who need support.
Coping and the life span
There were a number of coping traits which demarcated parents with pre-school-aged
children from other carers. They were far less sure about their experience and expertise
as carers (69%) than other carers in the sample (97%), and linked to this, they had less
self-belief and a lower opinion of their ability to handle situations (69% compared to
96%). These parents were also less assertive with their child (46% compared to 72%),
although it is not clear whether this was because of their inexperience or to cultural
norms surrounding child-rearing in the early years. A number of these carers had stor-
ies to tell about their experience of disclosure of their child's handicap. The manner of
the telling had left some of the parents traumatized and daunted by the prospects of
years of caregiving. They tended to rely much more than others on stress alleviation
techniques like having a good cry (46% compared to 25%), cheering themselves up by
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eating, drinking or smoking (77% compared to 52%), or by getting rid of excess energy
(68% compared to 47%).
At the other end of the spectrum, carers supporting disabled relatives who were
aged 40 years or more displayed very different coping traits. Compared to other carers,
they were much more resigned to their role: they placed less emphasis on information-
seeking strategies (41% compared to 76%), and although having a well-developed
capacity to reframe the meaning of situations (100% were able to see the funny side of
things and found this useful), they were less supportive of the view that things were
better now than they used to be (58% compared to 90%), but generally more accepting
about the way things are (92% compared to 73%). Nevertheless, a number of these
carers offered the view that they ought to have been more assertive than they had
been in the past to get what they wanted from services. They emphasized a depen-
dency on personal and religious beliefs (67% compared to 21%) much more than other
carers in managing their circumstances, a sign perhaps of their adopting a more philo-
sophical stance about life's vicissitudes in later life, something which appears to be
shared with many of today's generation of older people. However, resignation about
one's role in caring can breed a reluctance to seek help, and when coupled with a bond
infused with reciprocities with their relative (Walker & Walker 1998), it can become a
powerful force for concealing felt need.
Carers of school-aged children and younger adults can be viewed together because
they seemed to share coping traits. In coping terms, these carers placed greater impor-
tance on problem-solving methods: more than other carers, they emphasized the use-
fulness of having a regular routine and sticking to it (93% compared to 80%), a
strategy of prevention rather than cure (87% compared to 47%), 100% dependency on
their own experience and expertise compared to 80% amongst other carers, and trying
a number of solutions until one is found that works (93% compared to 64%). These
carers typically had multiple demands placed on their time and resources (e.g. other
children, employment, the needs of other relatives, and their own further education or
retraining in some cases), and therefore, structures, routines and worked-out strategies
for dealing with situations were much more at a premium.
Depicted even in crude chronological age categorizations like the above, the present
®ndings do seem to point to some discernible shifts in coping strategies which are
linked with life stage.
Lone carers
There were 10 lone carers in the sample (nine women and one man), consisting of
unmarried, separated/divorced and widowed persons, and this group included people
at all stages in the life span. Every single one of these carers placed a strong emphasis
on cognitive coping strategies. Indeed, all of them found the following coping strategies
useful:
. seeing the funny side of the situation;
. realizing that their offspring was not to blame for things;
. taking one day at a time;
. accepting the situation as it was;
. believing in themselves and their ability to handle the situation; and
. looking for the positive things in each situation.
Such a high dependency on cognitive coping marked them out from other family
carers. Although some had siblings or other relatives on whom they could depend,
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271
they tended not to ®nd help from these sources very helpful (20% lone carers, 55%
other carers); hence, help-seeking from the family was less used as a coping strategy.
As the main or sole providers of support for their child(ren), lone carers found meeting
all their commitments very demanding. This was exacerbated when respite and home
care support services were lacking or perceived to be in¯exible in responding to their
expressed needs. These factors combined to reinforce a dependency on carers' abilities
to make sense of the way things were.
The pressures of everyday caring and coping were all too evident amongst these
carers. One lone parent, Vicki, supporting six children, one of them disabled, summed
up her feelings about the use of relaxation techniques as a coping device by comment-
ing succinctly, `I haven't got the time!' Her disabled child, Richard, aged 14 years, had
heightened tactile awareness which seemed linked to his uncontrollable head banging
which Vicki had found very dif®cult to deal with. She was constantly reappraising
what to do, but this in itself was enervating:
Vicki: I go through stages where I can go for weeks where I can't sleep, and I'm tos-
sing and turning. I'm up most of the night, and then I'll go through a stage where I'll
have a good night's sleep and that will last for a bit and then I'm back to where I can't
sleep.
Interviewer: So it's like a cycle?
Vicki: Yes, it's like my brain won't switch off. I'm mulling over everything and I'm
putting the world to rights, you know.
Interviewer: Life's like that?
Vicki: I should have done this, I should have done that better ± yes, like that.
Time management is a persistent pressure among families with disabled children
(Todd & Shearn 1996), but this seemed to be particularly pressing among working-
aged lone carers, especially where they did not have access to a personal con®dant(e).
The result was a heightened dependency on personal resources for managing things.
This could be taxing organizationally as well as psychologically, even when carers had
well-planned structures and schedules for coping. For example, Barbara was a mother
of three boys. David attended a local special school, whilst his two brothers went to a
local mainstream school. Barbara was a mature university student, and was having to
®t her own education, private study and social life around the daily schedule of getting
her boys to and from school. Every hour of every day was associated with a task to be
accomplished. Additional demands on Barbara's time had to be expertly juggled; for
example, the two research interviews for the present study represented very de®nite
opportunity costs to Barbara, taking her away from other tasks which she needed to
complete.
Discussion
The present ®ndings reaf®rm that family carers generally use a variety of problem-sol-
ving, cognitive and stress-reduction approaches to caregiving. However, there was evi-
dence to suggest that coping strategies, as measured by the CAMI, were differentiated
by gender, life stage and family structure:
1 Women identi®ed a slightly higher proportion of useful coping strategies than men.
Women inclined towards more instrumental problem-solving strategies than men, and
displayed greater self-belief and self-con®dence in their ability to handle situations.
Men were much more likely to defer to the caring experience and expertise of their
partners.
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2 Many couples across the age range appeared to adopt a `sharing-caring' together
approach which highlighted the importance of recognizing the signi®cant caring roles
played by fathers and other male carers. Lone carers placed a strong emphasis on cog-
nitive coping and those who were of working age found meeting all their commit-
ments very demanding.
3 In terms of life stage, parents with pre-school children were less con®dent about their
experience and expertise, and seemed to have less self-belief in their ability to handle
situations. Carers of school-aged and younger adults shared similar coping strategies,
and placed a stronger emphasis on problem-solving methods such as having a regular
routine, working to a set of priorities and trying a number of solutions until one is
found that works. By contrast, older carers were, on the one hand, more resigned to
their role and indicated more acceptance of the way things were, yet many also wished
that they had been more assertive in the past to get what they required from services.
There is little support for the `wear and tear' hypothesis, which suggests that, as peo-
ple age, their resourcefulness declines. The situation appears to be rather more complex
than this. If anything, there is more evidence from the present work and other studies
(Dyson 1993) to support the adaptation hypothesis which suggests that people con-
tinue to learn and adapt as they grow older, and as a result, their coping repertoires
expand and change in ways which are functional. Other authors (e.g. Tobin 1996) have
suggested that, although older `perpetual' parents may be threatened by un®nished
business as the life cycle nears its end, they often maintain intimacy, assertiveness and
a sense of control which can be missing from the lives of their age-related peers. This
may also help to explain why older parents have been reported to be healthier, have
better morale, and report no more burden and stress than parents in younger families
of individuals with intellectual disabilities or family carers of elderly people (Seltzer &
Krauss 1989).
Overall, the present ®ndings point towards both strengths and vulnerabilities in
family coping. On the strengths side, there is support for the view that families demon-
strate considerable resilience in their everyday coping, as demonstrated by the number
and range of coping strategies which they display, their use of behavioural/problem-
solving and cognitive coping strategies, as well as stress reduction techniques, but with
clear signs that the ®rst two of these categories are the most useful to them. This seems
to be consistent with ®ndings from studies of the coping strategies of family carers of
vulnerable older people (Nolan et al. 1996).
In relation to vulnerabilities, there must be some concerns that lone carers in particu-
lar have to rely quite so much on cognitive coping strategies since these are often used
when problem-solving approaches fail or cannot be located, as Vicki demonstrated so
well. In some important respects, men appeared to have less mastery over coping than
women. They were less self-con®dent and appeared to ®nd it harder to derive mean-
ingfulness from much of what was happening around them. They frequently sought to
distance themselves from the situation by deferring to their female partner or by main-
taining interests outside caring. Divorce and step-fatherhood may be amplifying gen-
dered differences in coping in these respects. Research into the negotiation of
fatherhood in families in general has indicated that the competence of fathers in rela-
tion to their knowledge and ability in child-rearing is perceived to be inferior to that of
mothers (Backett 1987). The ®ndings from the present study merely add weight to this
line of argument. The tactics of distancing indicated by some of the men also suggest
that some aspects of how they demonstrate their caring and coping are arguably more
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Journal of Applied Research in Intellectual Disabilities
273
discretionary than those of their female partners, much as has been suggested by
Clarke & Popay (1998) in their qualitative study of patterns of health and illness in
households with dependent children.
The ®ndings can be seen as a step towards understanding the differentiated coping
strategies of families of children and adults with intellectual disabilities. The CAMI
instrument was used as a research tool in the present study, but it is now also part of a
practitioner guide (Nolan et al. 1998) and has the prospect of being incorporated into
routine professional assessment practice to identify strengths and vulnerabilities in
family coping. Its application may help to isolate divergent and possibly incompatible
coping strategies between women and men, for example, but more importantly, it pro-
vides families themselves with a means to identify and assess what it is that they do
well, and therefore, in a way which is `identity-af®rming' (Todd & Shearn 1996).
By implication, the ®ndings from the present study also suggest the importance for
assessment practice of examining the coping strategies of all adult family members,
including the person with learning disabilities, and of avoiding a dependency on
accounts from mothers. Family systems approaches based on social support or social
network theory (Dunst et al. 1986) or human ecology theory (Bronfenbrenner 1979)
would appear to offer potential here.
Caveats need to be applied to the ®ndings of the present in some respects. This
study was small in scale and based on a largely purposive sample so there are dangers
in generalizing from the results. It was also located in Wales, a part of the UK where
there had been considerable investment in family support services as a result of the
All-Wales Strategy (Felce et al. 1998), and it is not known how far the effective coping
strategies described may have been in¯uenced by that investment. The life stage cate-
gories used in the analysis are very broad, even though these do serve to highlight
some age-related differences in successful coping. However, some directions for further
research are indicated, particularly with regard to:
. categories of vulnerable or marginalized carers (i.e. lone carers, men, young and
inexperienced carers, carers from different ethnic groups, and carers on low or ®xed
incomes) and their strategies for coping;
. phenomenological research into people with learning disabilities who support or
care for family members and colleagues;
. validation of coping effectiveness from the perspectives of people with learning dis-
abilities ± at the moment, their voice is not heard in this regard;
. longitudinal study of family coping and adaptation linked to temporal factors such
as the course of disability, life stage, changes in the structure and functioning of infor-
mal support networks, and service transitions ± there is virtually no tradition of UK
longitudinal research in this context; and
. the effects of family-systems-orientated care management on effective coping in
families, and in particular, the design of facilitative interventions which strengthen
each family's sense of control and effective styles of coping.
Acknowledgments
The authors wish to acknowledge the ®nancial support from the Welsh Of®ce which
made this study possible, and also the close collaboration of the families and commu-
nity teams who cannot be named. The views expressed are those of the authors alone.
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Journal of Applied Research in Intellectual Disabilities
Correspondence
Any correspondence should be directed to Gordon Grant, School of Nursing and Mid-
wifery, University of Shef®eld, Samuel Fox House, Northern General Hospital, Herries
Road, Shef®eld S5 7AU, UK.
References
Backett K. (1987) The negotiation of fatherhood. In: Reassessing Fatherhood: New Observations on
Fathers in the Modern Family (eds C. Lewis & M. O'Brien), pp. 74±90. Sage, London.
Baker B. L., Blacher J., Kopp C. B. & Kramer B. (1997) Parenting children with mental retardation.
In: International Review of Research in Mental Retardation (ed. N. W. Bray), pp. 1±45. Academic
Press, San Diego, CA.
Baxter C., Cummins R. A. & Polak S. (1995) A longitudinal study of parental stress and support:
from diagnosis of disability to leaving school. International Journal of Disability, Development and
Education 42 (2), 125±136.
Bayley M. (1973) Mental Handicap and Community Care. Routledge and Kegan Paul, London.
Beresford B. (1994) Positively Parents: Caring for a Severely Disabled Child. HMSO, London.
Booth T. & Booth W. (1998) Think of the children: growing up with parents who have learning
dif®culties. Journal of Learning Disabilities for Nursing, Health and Social Care 2 (3), 138±143.
Bronfenbrenner U. (1979) The Ecology of Human Development: Experiments by Nature and Design.
Harvard University Press, Cambridge, MA.
Brown J. (1993) Coping with stress: the bene®cial role of positive illusions. In: Cognitive Coping,
Families and Disability (eds A. P. Turnbull, J. M. Patterson, S. K. Behr, D. L. Murphy, J.
G. Marquis & M. J. Blue-Banning). Paul H Brookes, Baltimore, MD.
Clarke S. & Popay J. (1998) I'm just a bloke who has kids: men and women on parenthood. In:
Men, Gender Divisions and Welfare (eds J. Popay, J. Hearn & J. Edwards), pp. 196±230. Routledge,
London.
Dunst C. J., Trivette C. M. & Cross A. H. (1986) Mediating in¯uences of social support: personal,
family and child outcomes. American Journal of Mental De®ciency 90, 403±417.
Dunst C. J., Trivette C. M., et al. (1993) Building and Evaluating Family Support Initiatives. Paul H
Brookes, Baltimore, MD.
Dyson L. L. (1993) Response to the presence of a child with disabilities: parental stress and family
functioning over time. American Journal on Mental Retardation 98, 207±218.
Edwards J. R. & Cooper C. L. (1988) Research in stress, coping and health: theoretical and metho-
dological issues. Psychological Medicine 18, 15±20.
Felce D., Grant G., et al. (1998) Towards a Full Life: Researching Policy Innovation for People with
Learning Disabilities. Butterworth Heinemann, Oxford.
Floyd F. J. & Costigan C. L. (1997) Family interactions and family adaptation. In: International
Review of Research in Mental Retardation, Vol. 20 (ed. N. W. Bray), pp. 47±74. Academic Press,
San Diego, CA.
Folkman S. (1997) Positive psychological states and coping with severe stress. Social Science and
Medicine 45, 1207±1221.
Grant G., McGrath M. & Ramcharan P. (1994) How family and informal supporters appraise ser-
vice quality. International Journal of Disability, Development and Education 41 (2), 127±141.
Grant G. & Nolan M. (1993) Informal carers: sources and concomitants of satisfaction. Health and
Social Care in the Community 1 (3), 147±159.
Grant G., Ramcharan P., McGrath M., Nolan M. & Keady J. (1998) Rewards and grati®cations
among family caregivers: towards a re®ned model of caring and coping. Journal of Intellectual
Disability Research 42 (1), 58±71.
Hawley D. & DeHaan L. (1996) Towards a de®nition of family resilience: integrating life-span and
family perspectives. Family Process 35, 283±298.
Helff C. M. & Glidden L. M. (1998) More positive or less negative? Trends in research and adjust-
ment of families rearing children with developmental disabilities. Mental Retardation 36 (6), 457±
464.
=
2000 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 13, 256±275

Journal of Applied Research in Intellectual Disabilities
275
Lazarus R. S. (1993) Coping theory and research: past, present and future. Psychosomatic Medicine
55, 234±247.
Lazarus R. S. & Folkman S. (1984) Stress, Appraisal and Coping. Springer-Verlag, Berlin.
McGrath M. (1991) Multidisciplinary Teamwork: Community Mental Handicap Teams. Avebury, Alder-
shot.
Nolan M., Grant G. & Keady J. (1996) Understanding Family Care: A Multidimensional Model of Car-
ing and Coping. Open University Press, Buckingham.
Nolan M., Grant G. & Keady J. (1998) Assessing the Needs of Family Carers: A Guide for Practitioners.
Pavilion Publishing, Brighton.
Nolan M., Keady J. & Grant G. (1995) CAMI: a basis for assessment and support with family
carers. British Journal of Nursing 4 (14), 822±826.
Orr R. R., Cameron S. J. & Day D. M. (1991) Coping with stress in children who have mental retar-
dation: an evaluation of the double ABCX model. American Journal on Mental Retardation 95,
444±450.
Quine L. & Pahl J. (1991) Stress and coping in mothers caring for a child with severe learning dif®-
culties: a test of Lazarus' transactional model of coping. Journal of Community and Applied Social
Psychology 1, 57±70.
Robinson C. & Williams V. (1999) In Their Own Right Project about the Carers Act 1995. Norah Fry
Research Centre, University of Bristol, Bristol.
Schumacher K. L., Stewart B. J. & Archbold P. G. (1998) Conceptualisation and measurement of
doing caregiving well. Image: Journal of Nursing Scholarship 30 (1), 63±69.
Seltzer M. M. & Krauss M. W. (1989) Aging parents with mentally retarded children: family risk
factors and sources of support. American Journal on Mental Retardation 94, 303±312.
Sloper P., Knussen C., Turner S. & Cunningham C. C. (1991) Factors related to stress and satisfac-
tion with life in families of children with Down Syndrome. Journal of Child Psychology and Psy-
chiatry 32, 655±676.
Tobin S. S. (1996) A non-normative age contrast: elderly parents caring for offspring with mental
retardation. In: Adulthood and Aging: Research on Continuities and Discontinuities (ed. V.
L. Bengston), pp. 124±142. Springer-Verlag, Berlin.
Todd S. & Shearn J. (1996) Struggles with time: the careers of parents of adult sons and daughters
with learning disabilities. Disability and Society 11, 379±402.
Walden S., Pistrang N. & Joyce T. (2000) Parents of adults with intellectual disabilities: quality of
life and experiences of caring. Journal of Applied Research in Intellectual Disabilities 13(2), 62±76.
Walker C. & Walker A. (1998) Uncertain Future: People with Learning Disabilities and Their Ageing
Family Carers. Pavilion Publishing and Joseph Rowntree Foundation, Brighton.
Wikler L. M. (1986) Periodic stresses of families of older mentally retarded children: an explora-
tory study. American Journal of Mental De®ciency 90 (6), 703±706.
Wilson S., Morse J. & Penrod J. (1998) Absolute involvement: the experience of mothers of ventila-
tor-dependent children. Health and Social Care in the Community 6 (4), 224±233.
=
2000 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 13, 256±275