Sampling Considerations Discussion

Article

Are parents identifying positive aspects to parenting their child with an intellectual disability or are they just coping? A qualitative exploration

Carole Beighton Kingston & St. Georges University of London, United Kingdom of Great Britain and Northern Ireland

Jane Wills London South Bank University, United Kingdom of Great Britain and Northern Ireland

Date accepted: 30 May 2016

Abstract Although acknowledging the stress of raising their child with intellectual disabilities, parents also report that their child has brought about many positive changes in themselves and family. This study reports what parents perceive to be a positive aspect of parenting their child, as currently what constitutes a ‘positive’ is unclear. Seven key themes were identified; an increased sense of personal strength and confidence, changed priorities, greater appreciation of life, pleasure in the child’s accomplishments, increased faith/spirituality, more meaningful relationships and the positive effect that the child has on the wider community. Interpretive examination of the themes reveals that the positive aspects identified consist mostly of meaning-focused coping strategies. These enable parents to adapt successfully to the stressful experiences of raising their child and therefore could be amenable to meaning-focused therapeutic interventions for parents with newly diagnosed children or for those unable to identify any positive aspects of parenting their child.

Keywords intellectual disabilities, caring, meaning-focused coping, positive aspects, positive reframing

Corresponding author:

Carole Beighton, Faculty of Health, Social Care and Education, Kingston & St. Georges University of London, Cranmer

Terrace, London, SW17 0RE, United Kingdom of Great Britain and Northern Ireland.

Email: carole.beighton@sgul.kingston.ac.uk

Journal of Intellectual Disabilities 2017, Vol. 21(4) 325–345

ª The Author(s) 2016

Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629516656073

journals.sagepub.com/home/jid

Background

Most children with intellectual disabilities live at home with their parents, with the majority of

parents providing lifelong support for their child (Emerson and Hatton, 2008). This support can

include direct care (helping with activities of daily living, i.e. washing or dressing), emotional care

(providing support and encouragement), mediation care (negotiating with others on behalf of the

individual, i.e. services) and financial care (Horowitz, 1985). In addition, the child will often

experience long-term chronic conditions and/or complex health-care needs that will also require

ongoing daily management, time and resources.

This need for lifelong support has led historically to research on parenting a child with intel-

lectual disabilities to be framed within stimulus-based orientation to stress models and the medical

model, both of which construct intellectual disability as a series of functional deficits (Emerson

and Hatton, 2014). Both focus on the child as a ‘negative stressor’ and report the negative impact or

burden that the child’s impairment(s) have on the parent or family, including higher levels of

psychological distress, depressive symptoms and poorer general health than parents of typically

developing children (Miodrag and Hodapp 2010; Woodman and Hauser-Cram, 2013), with these

poor outcomes increasing with the duration and intensity of the ‘caring’ role (Department of

Health, 2010; Neece and Baker, 2008).

Anecdotal findings of parents reporting ‘positive aspects’ of parenting in studies exploring

stress were initially seen as denial or as a maladaptive reality distortion (Affleck and Tennen,

1996), however, although often conceived as reflecting opposite dimensions, negative and positive

appraisals of the impact of parenting a child with an intellectual disability have been found to be

independent of each other and can also occur simultaneously (Hastings and Taunt, 2002; Rapanaro

et al., 2008; Stainton and Besser, 1998).

Positive aspects

The aspects that parents perceive to be positive are difficult to define as the disability field lacks

theoretical models that address the idea of ‘positivity’ and in addition, the elements that contribute

to the construct of a positive aspect are complex, not clearly defined and there is a lack of con-

ceptual clarity leading it to be conceptualized differently between studies (Blacher and Baker,

2007; Helgeson et al., 2006). Only a few studies have provided definitions of what a positive aspect

is, ‘any indication that the family or any of its individual members have benefited as a result of the

child with disabilities’ (Helff and Glidden, 1998: 459) or the ‘belief or conclusion that an adverse

event or circumstance has revealed or evoked positive outcomes in one’s life’ (Rapanaro et al.,

2008: 35).

In addition, the terms used by researchers to define these positive aspects are used inter-

changeably, the most common being positive impact(s) (Blacher and Baker, 2007; Blacher et al.,

2013; Hastings et al., 2002; Lakhani et al., 2013; Scallan et al., 2011; Stainton and Besser, 1998).

Others variously describe positive perceptions (Baker et al., 2005; Greer et al., 2006; Hastings

et al., 2002; Hastings and Taunt, 2002; Vilaseca et al., 2013) as benefits or benefit finding

(Rapanaro et al., 2008; Foster et al. 2010), positive contributions (Hastings et al., 2005), rewards

(Grant et al., 1998), positive experiences (Kimura and Yamazaki, 2013), gratifications (Valentine

et al., 1998), positive contributions (Behr et al., 1992; Turnbull et al., 1988), stress-related growth

(King and Patterson, 2000), transformations (Scorgie et al., 2001) and positive aspects (Kenny and

McGilloway, 2007).

326 Journal of Intellectual Disabilities 21(4)

The positive aspects that parents identify can refer to actual changes that they have undergone

or perceptions of change, however, due to the lack of conceptual clarity this has resulted in a mix of

quantitative instruments and measures being used, generating results that are difficult to compare.

Meta-analytic findings of benefit finding and growth (across a wide range of stressful events)

suggest that benefit finding measured ‘sometime’ after the event reflects actual change or growth

in the person, whereas measuring benefit finding soon after the event reflects a cognitive strategy

used to reduce stress, however it is conceded that this is difficult to pinpoint as it appears

researchers are not all studying the same phenomenon (Helgeson et al. 2006).

Caregivers of older people with dementia who report positive aspects of caring have been found

to have better self-reported health, less depressive symptoms and higher caregiving competence

(Basu et al., 2015; Cheng et al., 2013). However, similar studies about carers supporting older

people express concerns for carers who are unable to identify any positive aspects of their caring

role; one concluding, ‘carers who cannot identify anything positive about caring may be at par-

ticular risk for depression and poor health outcomes in addition to institutionalizing the cared for

earlier than others’ (Cohen et al., 2002: 188), and Nolan et al. (1996) report that a lack of carer

‘gratification’ could be an indicator of risk of abuse for older people.

Parents of children with intellectual disabilities spend the longest time as carers (it is estimated

that 75% of parents have been caring for more than 20 years, compared to an average of 18.1% for all carers in England; Emerson et al., 2012), and this has been shown to impact their well-being.

Therefore, it is important to understand what these parents perceive to be positive aspects and in

addition whether the positives they describe could be amenable to therapeutic interventions that

might increase positivity. This could be an important resource for parents of newly diagnosed

children or for parents who are unable to identify any positive aspects.

In an attempt to draw conclusions about the nature of the ‘positive perceptions’, Hastings and

Taunt (2002) compared five studies where parents were asked to describe ‘the positive impact that

a child with a disability can have on the family’ and identified a framework of 14 key positive

themes. Despite differing sample sizes, methodologies and ways of conceptualizing positive

perceptions and experiences, they found consistent themes identified across all the studies as

shown in Table 1.

It has been posited, however, that parents are not actually identifying positive aspects of par-

enting their child per se, but the positives they describe are adaptive coping mechanisms in which

they engage in positive reframing, one of the most common components of meaning-focused

coping (Hastings et al., 2002; Park and Folkman, 1997). Some do not support this assumption

and argue that these benefits are not artifacts of cognitive coping mechanisms (Greer et al., 2006;

Stainton and Besser, 1998; Taylor, 1983) and that if a parent reports benefits, ‘we should take them

at their word’ (McConnell et al., 2015: 1).

Meaning-focused coping

Coping is a response aimed at ‘diminishing the physical, emotional and psychological burden that

is linked to stressful life events . . . ’ (Snyder and Dinoff, 1999: 5) and the transactional model of stress and coping (Lazarus and Folkman, 1987) highlights the cognitive and emotional aspects of

the person experiencing the stress with the appraisal and coping process central to this perspective.

This model includes ‘positive psychological states’ which are the result of meaning-focused

coping strategies that involve searching for ‘a more favorable understanding of the situation and

Beighton and Wills 327

its implications’ (Park, 2013: 40) and has been widely adopted for use in studies of families of

children with intellectual disabilities (Grant et al., 1998).

Within meaning-focused coping, positive reappraisal (also referred to as positive reframing,

positive cognitive restructuring and benefit finding) is the most commonly used strategy. Pos-

itive reappraisal is a way of viewing and experiencing the stressful events, ideas, concepts and

emotions in order to find more positive alternatives; for example, deciding that there are ‘more

important things in life’, ‘something a lot worse could happen’ or ‘finding a silver lining’ (Hill

Rice, 2012; Troy et al., 2010). In quantitative studies, positive reappraisal was found to be a

significant independent predictor of positive perceptions in mothers of children with an intel-

lectual disability after controlling for other factors such as social support and degree of care

required (Hastings et al., 2002).

‘Meaning’ is described as ‘making sense, order or coherence out of one’s existence’ (Reker

et al., 1987: 44). Meaning-focused coping is based on the assumption that individuals experience

stress when they perceive discrepancies between their appraised meaning of a particular situation

(degree of threat, harm, controllability, implications) and their global meaning (fundamental

assumptions of life, values, goals, beliefs, desires) (Park and Folkman, 1997). For example, most

parents assume that their child will be healthy and follow a normal development pattern and the

diagnosis of intellectual disability is likely to violate their beliefs about the fairness of why this has

happened to them. Most will be faced with how to resolve the incongruence between their global

and appraised meaning. This will require them to reevaluate their hoped-for future life goals, plans

and priorities, and this incongruence may be changed by searching for a more favourable

understanding of the situation, reducing the mismatch between situational and global meaning

(Park, 2013).

Other strategies used in meaning-focused coping includes benefit reminding (making an

intentional effort to recall previously found benefits), adaptive goal processes (revising goals and

planning goal-directed problem-focused coping that fosters meaning in terms of purpose and

control), reordering of priorities (value-based process where aspects of life move up or down the

priority ladder) and activating spiritual beliefs and experiences through which individuals find

existential meaning (Park, 2011).

Table 1. Positive perceptions identified by parents: Themes across five studies (Hastings and Taunt 2002: 118).

� Pleasure/satisfaction in providing care for the child � Child is a source of joy/happiness � Sense of accomplishment in having done one’s best for the child � Sharing love with the child � Child provides a challenge or opportunity to learn and develop � Strengthened family and/or marriage � Gives a new or increased sense of purpose in life � Has led to the development of new skills, abilities or new career opportunities � Become a better person (more compassionate, less selfish, more tolerant) � Increased personal strength or confidence � Expanded social and community networks � Increased spirituality � Changed one’s perspective on life (clarified what is important in life, more aware of the future) � Making the most of each day, living life at a slower pace

328 Journal of Intellectual Disabilities 21(4)

Over the past 20 years there has been a small body of literature that has recognized the positive

contributions, rather than the negative effect, a child with an intellectual disability makes to the

family (Hastings and Taunt, 2002). However, exploring what parents describe or perceive to be

positive and the factors surrounding their occurrence requires further investigation in order to

understand this phenomenon more fully.

Aim of study

The aim of this study is to explore what parents perceive to be the positive aspects of parenting

their child with intellectual disabilities. Its objective is to clarify the nature of any positive aspects

that parents describe. Secondary objectives are to ascertain if any positive aspects identified arise

from parents reframing their experience, which could be considered meaning-focused coping stra-

tegies or if there is a discourse of parenting a child with intellectual disabilities which is positive.

Methods

This qualitative study was undertaken as the first phase of a sequential mixed methods study

(Creswell and Clark, 2007) and is underpinned by the philosophy of pragmatism (Biesta, 2010).

One of the fundamental components of pragmatism is that it is a process of ‘knowing’ the current

situation and through action re-shaping a new reality (Hartrick Doane and Varcoe, 2005).

Ethical approval for this study was granted from the London South Bank University research

ethics committee in September 2013 (UREC 1338). Face-to-face semi-structured interviews were

considered most appropriate as they would be more convenient for carers and allow them to

respond to guided questions (Kvale, 2007; Mays and Pope, 2008) and were undertaken by the first

author. The parents’ own characteristics and attributes and the wider social/psychological envi-

ronment were then explored through a series of questions included in the interview schedule (Box

1). The interviews were audio-recorded and following each interview field notes were written

which included the researcher’s reflections.

The audio files were transcribed verbatim, reviewed for accuracy and potential identifying

features were anonymized. The data were then analysed using a thematic analysis (Braun and

Clarke, 2006) to identify key themes at a semantic level which Boyatzis (1998) describes as not

looking beyond what the participant has said. As the first author had already undertaken a

systematic literature review on the positive aspects of parenting, it was important, while

undertaking the data analysis, to avoid the unconscious ‘seeing’ of data that researchers expect to

find (Crabtree and Miller, 1999) and also not to force the data into preconceived categories,

affecting the confirmability of the findings. Multiple readings of the transcripts and field notes

took place and annotations were added prior to coding. Coding was initially a phrase or a single

word that captured the ‘essence’ of what a positive aspect might be and was undertaken first in

individual transcripts and then across all 17 transcripts. Areas of consensus began to emerge and

cluster as themes in relation to the research question, and the themes were then further clustered

and assigned succinct phrases to describe the meaning that underpinned each theme. The ade-

quacy and appropriateness of the themes were subject to interpretive rigour (Ezzy, 2002) as these

were checked by two other researchers and any discrepancies or disagreements led to all the

research team reading the transcript together and agreeing a coding and theme, increasing the

credibility and trustworthiness of the data interpretation. Following this analysis, the secondary

objective of whether these themes could be considered meaning-focused coping strategies was

Beighton and Wills 329

explored at an interpretive level (Boyatzis, 1998) by scrutinizing the ‘broader meanings of the

themes’ (Patton, 2002).

Participants

Fourteen mothers and five fathers (includes two couples) were recruited through learning disability

partnership boards and local MENCAP (a leading charity for people with ID) organizations from

London boroughs between October 2013 and March 2014. Inclusion criteria for the parent par-

ticipants were that the child they supported had a diagnosis of intellectual disability, parents had to

communicate using English language, be aged over 18 years and that the child was over 5 years of

age and lived in the same household. Between them the participants parented 10 males and 9

females who had a diverse range of intellectual and associated physical disabilities with two

families containing more than one child with intellectual disabilities. Table 2 provides a summary

of the characteristics of the participants and their child (children) at the time of the interview.

Findings

All but one parent chose to be interviewed in their own home and each interview lasted approx-

imately 1 h. Despite the focus of the interviews being to identify the positives of parenting a child

with intellectual disabilities, in every interview a much larger proportion of time was spent by the

parent talking about the negative aspects of parenting their child which is consistent with other

qualitative studies, (Foster et al., 2010; Rapanaro et al., 2008; Skotko et al., 2011). However, only

the positive aspects will be reported here. Six of the overarching themes identified were broadly

similar across the framework of positive themes identified by Hastings and Taunt (2002) however,

one theme was identified from this study which had not been identified by them, the positive effect

the child has on others.

The seven key themes identified covered three broad areas. Intrapersonal factors, those which

have a direct influence on the parent themselves (increased personal strength, changed priorities, a

greater appreciation of life, increased spirituality/religiosity), interpersonal factors; factors that

relate to aspects which exist between persons (more meaningful relationships with others, the

positive effect the child has on others) and one factor where the child is the source of positivity, the

child’s accomplishments. These themes were identified in the transcripts of all parents irrespective

of their gender or the age of the child.

1. Tell me about yourself . . . 2. Can you tell me about your child?

3. Can you describe to me in which ways [child’s name] had a positive impact on you or

your family?

4. What makes these ‘positives’ meaningful for you?

5. Are there other words or a term you would use instead to describe the(se) ‘positive

aspects’?

6. In your experience, do/can these positive aspects change over the time/years you spend

caring?

Box 1. Interview schedule.

330 Journal of Intellectual Disabilities 21(4)

T a b

le 2 .

S u m

m ar

y o f th

e ch

ar ac

te ri

st ic

s o f th

e p ar

ti ci

p an

ts an

d th

e ir

ch ild

(c h ild

re n ).

P ar

e n t

C h ild

/a d u lt

w it h

ID

N o

A ge

G e n d e r

E th

n ic

it y

M ar

it al

S ta

tu s

O cc

u p at

io n

A ge

G e n d e r

D ia

gn o si

s P o si

ti o n

in F am

ily

1 6 2

F B ri

ti sh

M ar

ri e d

R e ti re

d 4 3

F G

D D

/P h ys

ic al

d is

ab ili

ti e s

O n ly

ch ild

2 5 3 , 4 0

M , F

C au

ca si

an M

ar ri

e d

U n e m

p lo

ye d /

ca re

r 1 5 , 1 3

M , M

B o th

G D

D , p lu

s o n e

al so

h as

A S D

S e co

n d

an d

th ir

d o f fi ve

ch ild

re n

3 6 4

F W

h it e

S o u th

A fr

ic an

D iv

o rc

e d /

si n gl

e R

e ti re

d 1 2

F A

S D

O n ly

ch ild

(g ra

n d d au

gh te

r)

4 6 3 , 6 4

M , F

C au

ca si

an M

ar ri

e d

R e ti re

d 3 4

M S p in

a b if id

a, h yd

ro ce

p h al

u s

Y o u n ge

st o f 3

5 7 0

F C

au ca

si an

M ar

ri e d

R e ti re

d 7

M A

S D

O n ly

ch ild

(g ra

n d so

n )

6 4 5

F C

o lu

m b ia

n D

iv o rc

e d /

si n gl

e F u ll-

ti m

e ca

re r

1 2

F A

S D

O n ly

ch ild

7 3 3

F T

u rk

is h

M ar

ri e d

F u ll-

ti m

e ca

re r

7 , 7

M , M

G D

D ,b

lin d ,o

n e

al so

p ar

ti al

ly d e af

O n ly

ch ild

re n

(t w

in s)

8 4 0

M A

si an

M ar

ri e d

U n e m

p lo

ye d

1 0

F G

D D

Y o u n ge

st o f th

re e

9 5 9

F C

au ca

si an

M ar

ri e d

U n e m

p lo

ye d

3 3

F W

ill ia

m s

sy n d ro

m e

Y o u n ge

st o f tw

o 1 0

6 8

M C

au ca

si an

M ar

ri e d

R e ti re

d 3 2

M D

o w

n sy

n d ro

m e

Y o u n ge

st o f th

re e

1 1

4 9

F Ja

m ai

ca n

S in

gl e

E m

p lo

ye d

fu ll-

ti m

e 2 5

M G

D D

an d

A S D

O n ly

ch ild

1 2

6 0

F A

u st

ra lia

n S in

gl e

F u ll-

ti m

e st

u d e n t

3 6

F B lin

d an

d A

S D

Y o u n ge

st o f tw

o

1 3

5 1

F C

au ca

si an

M ar

ri e d

E m

p lo

ye d

p ar

t- ti m

e 2 7

M C

h ro

m o so

m al

ab n o rm

al it y

Y o u n ge

st o f tw

o

1 4

3 2

F C

au ca

si an

S e p ar

at e d /

si n gl

e F u ll-

ti m

e ca

re r

1 5

F G

D D

/p h ys

ic al

d is

ab ili

ti e s

O n ly

ch ild

1 5

4 8

F C

au ca

si an

M ar

ri e d

E m

p lo

ye d

p ar

t- ti m

e 2 3

M D

o w

n sy

n d ro

m e

Y o u n ge

st o f tw

o

1 6

6 1

F C

au ca

si an

M ar

ri e d

R e ti re

d 3 1 ,

F A

S D

M id

d le

ch ild

o f th

re e

1 7

2 9

F P o lis

h S in

gl e

F u ll-

ti m

e ca

re r

7 M

A cq

u ir

e d

b ra

in in

ju ry

O n ly

ch ild

G D

D : gl

o b al

d e ve

lo p m

e n ta

l d e la

y; A

S D

, au

ti sm

sp e ct

ru m

d is

o rd

e r;

ID : in

te lle

ct u al

d is

ab ili

ty .

331

Increased personal strength

This was the most common theme identified, and without exception all the parents reported how

they had changed and had become stronger, tougher and more confident as a result of their child.

Some described gaining a new inner strength they did not have before and they compared this in

terms of the ‘old’ me and the ‘new’ me. However, when they spoke about acquiring an increased

personal strength, it became synonymous with ‘fighting’ in many cases as they equated it to how

they needed to ‘fight’ for services and advocate on behalf of their children. They felt that now if

they could handle ‘this situation’ then they could handle about anything.

I wouldn’t be the same person if I didn’t have him, um he’s really made me be more proactive and

confident. I was never like that before and he’s made me, he’s made me pull my socks up and get on

with things. (Parent 13)

Changed priorities

Every parent attributed how their perceptions of what was important in life had changed directly as a

result of having their child, both in the way they approached life revising what was important to

them in life. Personal changes included being less materialistic, less selfish and being more content.

Four of the mothers had changed career paths of which two had become nurses and one a counsellor

and another had given up the well-paid work to study, something she had always wanted to do.

. . . I’ve realised what things are more important than other things, you know, there are things that I

used to think were important and I look back and I think to myself they really had no value at all.

(Parent 5)

Greater appreciation of life

Despite unanimous agreement that their life had become harder and more stressful since having

their children, parents spoke of gaining a greater satisfaction and greater sense of life’s values and

having a new perspective and an increased appreciation of what they have in life. On the whole,

they had become more appreciative of the ‘simple things in life’ such as just enjoying spending

time with the child and others and approaching life one day at a time (some due to the uncertainty

of their child’s condition). Some described how easy it was in life to get caught up in keeping up

with the expectations and views of others and society and that having their child had made them

take stock and consider what they have in life and what is important.

I think when you see the world through our sons and daughters eyes it makes it very clear that actually

we’ve got so much to be happy for, be glad for, be grateful for in life. (Parent 13)

Child’s accomplishments

Without exception, every parent spoke about how much they loved their child. They described a

positive aspect as the child’s accomplishments, no matter how small, especially if the child ‘tri-

umphs over adversity’, the pleasure gained from seeing their child accomplish something that they

thought or had been told that they would never be able to do took on a special meaning. These

332 Journal of Intellectual Disabilities 21(4)

accomplishments ranged from simple things such as just saying a new word, tying a shoelace and

learning to walk to more serious incidents such as surviving serious illness.

I’m saying to myself oh I’m so lucky, for example [childs name] is walking. It’s such a big thing for me,

I don’t care what else is happening in the world, it makes my day to see him walk when they said he

never would. (Parent 7)

Increased spirituality/faith

Three parents described how they had initially ‘lost’ their faith (one permanently) and spoke about

‘refinding’ God as they believed the child had been brought into their lives for a reason. Others

reported taking a more philosophical approach to their situation. Although wondering why this

had happened to them, they accepted that it was ’meant to be’ and were going to get on with

whatever life had in store for them.

. . . because I just say maybe God thought – my belief, my strong belief . . . there got to be a big reason

for this – I don’t know, I came here for her. I say that child needed a mother and that mother was me.

(Parent 6)

More meaningful relationships

Parents recounted how having more meaningful relationships with family members, others outside

the family and professionals had become really important to them. Two parents expressed how

their child had strengthened their marriage, and others spoke about working well together, being

closer and supporting each other through ‘thick and thin’. Some described how through having

their child they found out who their ‘true friends were’ and described friendships with other parents

who had children with intellectual disabilities as ‘deep’ and ‘special’ due to the bond they shared

with their ‘special’ children. Most acknowledged that they had become more patient, accepting and

tolerant towards people in general and that they had experienced an increased sense of compassion

and empathy towards others, especially those who were vulnerable or had disabilities as they felt

that they knew what they were going through.

I met a group of friends and we are friends to this day, most of them have children with learning

disabilities, we understand what each other is going through . . . . (Parent 1)

Positive effect of the child on others

Parents spoke about their child not only having a positive influence on their lives but also a positive

effect on the lives of others who came into contact with them. They described how people meeting

their children not only gained an understanding of intellectual disability but also learned to see

beyond the disability and got to know and love the real ‘them’.

The positive I guess the fact that he has improved our friend’s attitude towards learning disabled

because they have seen and they have got to know [child’s name] and he is physically handicapped as

well and it has changed their attitude to other people with disability. (Parent 4)

Beighton and Wills 333

The key themes, sub themes and further illustrative quotes are shown in Table 3. The broader

meaning of each key theme was then scrutinized at an interpretive level (Boyatzis, 1998) and the

transcripts also revisited to ascertain if any of the positive aspects identified arise from parents

reframing their experience which could be considered meaning-focused coping strategies.

Discussion

Joy, hope and pride were the most common terms used to describe their children and are examples

of discrete positive emotions which counteract the physiological effects of negative emotions,

facilitate adaptive coping (Folkman and Moskowitz, 2004) and fuel psychological resiliency

(Fredrickson, 2001). The parents could be filled with ‘hope’ that their child would one day be able

to achieve certain goals and hope in families of children with intellectual disabilities has been

described as ‘a complex intangible in the healing and coping process’ (Kauser et al., 2003: 35).

Love is a compilation of all of these emotions (Fredrickson, 2011) and every parent in this study

spoke about feelings of love for their child and how proud they were when their child achieved

something unexpected.

The parents also spoke about being thankful, grateful and optimistic. Gratitude is a feeling of

thankfulness and is considered a positive emotion and a coping response (Fredrickson, 2004), with

individuals who have higher dispositional gratitude viewing life experiences as more meaningful

and are more likely to use positive reframing strategies to interpret negative experiences (Lambert

et al., 2009), for example, parents being thankful for what they have in life and appreciating the

preciousness of life (Thoits, 1995). Gratitude is also related to dispositional optimism which has

also been positively associated with positive reinterpretation and reports of positive life changes

(Carver et al., 1989) and is the personality characteristic with one of the highest correlations with

well-being (Wood et al., 2007).

Early publications describe how parents were acutely affected by the degree to which their

child with intellectual disabilities was accepted or rejected by the community (Bristol, 1984;

Holroyd, 1974) and more recently (Esdaile, 2009) reported similar findings with mothers of

children with intellectual disabilities seeking to have their children accepted and valued by

others in society. Many families (especially those with older children) remember having to fight

to keep their child at home with them and for them not to be routinely institutionalized and kept

away from the society. Reporting that their child had made a positive impact on others could be

recognition to parents that their child has finally been ‘accepted’, leading them to feel a greater

sense of social connectedness and belonging (Esdaile, 2009) and potentially contributing to the

development of an extended social support system for their child, should it be needed

(Valentine et al., 1998).

Social support is defined as the ‘resources perceived as being available from others in social

networks’ (Lopez-Martinez et al., 2008: 373), and it is suggested that this may promote growth

related to interpersonal relationships and provide positive experiences that bolster positive affect

(Cadell et al., 2003; Tedeschi and Calhoun, 2004). Parents also spoke about gaining and main-

taining informal supportive family and friends networks and also engaging in more formal rela-

tionships with statutory professionals. One unique aspect of parenting a child with intellectual

disabilities is the relationship the parent must enter with formal support services in order to arrange

support services for the child throughout their lifetime. Formal support was found to be as effective

as informal support by parents of children with intellectual disabilities, and the perceived help-

fulness of formal support for parents has emerged as a significant predictor of positive perceptions

334 Journal of Intellectual Disabilities 21(4)

Table 3. Key themes and sub-themes identified relating to positive aspects.

Key Themes Sub-Themes Illustrative Quotes

Increased personal strength

Fight for my child � ‘It’s made us both tougher. You need to be tougher and grow thicker skin when your child is disabled or else you just get trodden on and don’t get anywhere’. (Parent 4)

� ‘ . . . but it’s taught me if I want something for him, like from the erm council, I have to find the tools to get there and not to stop until I get it’. (Parent 7)

Inner strength � ‘ . . . but I think this is good for me, I say this is building me up. This is giving me strength. This is making me a different person which many people say, ‘You have changed a lot. You have changed a lot.’ Right now I feel like I can do anything!’ (Parent 6)

� ‘That’s the word . . . I’m very headstrong now. I wasn’t before I had him and he’s made me stronger’. (Parent 11)

Changed priorities Life changing � ‘I did a master’s degree you know, and then I thought oh f*** you I’ll do it, I’ll do a PhD* as well, and I’ll do some work and I’ll do something else. I’ll do it all! Just finished my PhD and I’ve dedicated it to her . . . because without her I wouldn’t be doing it’. (Parent 12)

� ‘ . . . I do feel that it’s an honour that I’ve had [child’s name] because I would not be the person I am now. I would not be as tolerant, I would not be as creative, I would not be as big a person as I would have been otherwise. I could not have envisaged the world as I do now if I hadn’t had him’. (Parent 17)

Material things don’t matter

� ‘ . . . I understand now life is important, life is so short and if you have health you don’t need to complain anymore. For example money is not important, but health and happiness is important’. (Parent 3)

� ‘‘Money and all the trappings don’t mean much any more our priorities have definitely changed . . . ’’ (Parent 9)

� ‘‘We treasure each day with her, just spending time with her. Before we had her all we used to worry about was work, work, work . . . . how naive we were that that’s what we thought mattered most in our lives’’ (Parent 16)

Greater appreciation of life

Live one day at a time � ‘Funny thing to say isn’t it? When I had him I thought I couldn’t live with him and now I couldn’t live one day without him and with his illness we just enjoy one day at a time . . . ’ (Parent 10)

� ‘We live one day at a time, enjoying the best of life we possibly can . . . .’ (Parent 7)

Simple things mean more

� ‘ . . . we get a lot of pleasure just spending time with [child’s name]. We don’t even have to be doing anything fancy you know, something like just taking her for a walk in the park, that’s what we enjoy, the simple things. Does that sound weird’? (Parent 1)

(continued)

Beighton and Wills 335

Table 3. (continued)

Key Themes Sub-Themes Illustrative Quotes

� ‘I think one of the positives is basic simple things in life are more apparent that I could enjoy are important more than other things perhaps I have not expressed it properly but perhaps it puts your priorities right’. (Parent 14)

More meaningful relationships

Closer relationships with others

� ‘ . . . if I had not had (child’s name) I don’t think I would still be married . . . because we’ve had [child’s name] we’ve had to concentrate more on us. I think possibly we could have broken up. I think she has bonded us together. I think so, so that’s good. (Parent 1)

� ‘ . . . it’s pushed me out of my reservations but also it’s made me so, so much more tolerant of people’. (Parent 11)

Empathy with others in a similar situation

� ‘ . . . if you see someone in the street that is disabled and like I said before to you would feel now you want to go and talk to them, you relate to them you see them more as a person than before when you would see them just as the person with a disability’. (Parent 4)

� ‘ . . . although I’ve always had a certain amount of empathy . . . you actually grow . . . it grows huge because you then start thinking of how they’re feeling, and then when you start thinking of how other people are feeling when you say certain things to them, so then you then start thinking before you speak, because you’re thinking of how it will affect that person’. (Parent 5)

Increased spirituality/faith

Faith � ‘I’m a Christian and it’s very much a Christian teaching helping others, understanding others, not being so selfish being more humble too and I think in some ways that it’s almost good for me . . . ’ (Parent 3)

� ‘I think sometimes God has some influence in your life and he brings people like those for you to become or accentuate your positive aspects towards people with learning disabilities’. (Parent 8)

Spirituality � ‘I’m definitely less judgemental, more empathic, more looking at the people inside, more spiritual, more looking at why these things happen in life . . . .’ (Parent 2)

� ‘It’s just how you make it at the end of the day, it’s how you are and [child’s name] was given to us for a reason and we get on with it’ (Parent 5)

Child’s accomplishments

Triumph over adversity � ‘If I hear someone turn round and say she can’t do it and then she does it, then I feel like rubbing that person’s face in it [laughter]’. (Parent 1)

(continued)

336 Journal of Intellectual Disabilities 21(4)

in parents (Hastings et al., 2002). The importance of social and family support, improved rela-

tionships and friendship with other parents in a similar position have been identified as positive

aspects in a number of studies (Foster et al., 2010; Kimura and Yamazaki 2013; Rapanaro et al.,

2008; Scallan et al., 2011). Parents in this study also spoke about more meaningful relationships

with others by becoming more compassionate, more empathic, less judgmental and having

increased tolerance and understanding towards others (especially those less fortunate than them-

selves) since having their child (Kenny and McGilloway, 2007; Skotko et al., 2011). Compassion is

an empathetic positive emotion and a major source of resilience (Lazarus, 1993).

This study reflects others that have reported parents having a changed outlook on life (Scallan

et al., 2011), identifying things that were considered important before but were not important now,

such as becoming less materialistic and selfish (Kenny and McGilloway, 2007), learning patience

and how to advocate (Skotko et al 2011). As found in other studies, parents described themselves

as becoming better people with changes in their personal beliefs and values (Kearney and Griffin,

2001) and having a greater sense of personal fulfilment (Rapanaro et al., 2008). Three parents

Table 3. (continued)

Key Themes Sub-Themes Illustrative Quotes

� ‘When I think of the phenomenal effort that [child’s name] puts into doing things and finally he does it you just think, I love him he’s so brilliant’. (Parent 11)

� . . . when you see her really struggling to overcome something and she does, it’s like massive (Parent 12)

Love for the child � ‘‘‘Oh he’s such fun, he’s great. It’s a joy to have him around. I mean he’s a little monster and we’ve been through hell together this little monster and I, but I do love him’. (Parent 5)

� He’s absolutely adorable and I love him to bits . . . . (Parent 11)

Positive effect the child has on others

Acceptance from others

� ‘ . . . when people come in contact with him they appreciate him and have got to love him like we do’. (Parent 4)

� ‘Everyone that comes into touch with her loves her’. (Parent 12)

Raising awareness of intellectual disabilities

� ‘ . . . from our point of view she has definitely enriched our lives and enriches other people’s that other people have never come across disability in any shape of form’. (Parent 1)

� ‘I actually think that other people are better off for coming into contact with our children you know’. (Parent 2)

� ‘I think it brings something to people’s lives, I think it makes them better people when they come into contact with people like [child’s name] (Parent 10)

� I notice now as well the positives for other people from him just meeting them . . . ’ (Parent 11)

*PhD: doctor of philosophy.

Beighton and Wills 337

described how they now ‘live for the day’, and consistent with other findings they enjoyed the

‘simple things in life’ (Kenny and McGilloway, 2007) like just seeing the child happy (Grant et al.,

1998). This is consistent with meaning-focused coping, where aspects of life move up or down in

priority, allowing individuals to focus on what matters most and letting go of things that are no

longer considered important, deciding ‘there are more important things in life’ and taking actions

to alter some aspect of the ‘self’ such as changing career paths. Positive reappraisal enabled the

parents to reorder their priorities, reconsider their global beliefs and revise their goals and sense of

meaning in life which provided them with a renewed sense of purpose and a ‘new or changed

perspective on life’ (Park, 2010; Wrosch, 2010).

Religion and spirituality play a crucial role in the meaning-making process as they are a core

aspect of global meaning with individuals reappraising their situation as an opportunity for

spiritual growth and feeling closer or reconnecting to God (Park, 2013; Park and Folkman, 1997).

Faith, religious beliefs or spirituality have all been identified as coping mechanisms related to

psychological adjustment to stress (Pargament et al., 1998), and this can also provide psycholo-

gical and emotional support from others such as members of the church (Skinner et al., 2001).

Although some parents in this study spoke about spiritual growth, increased religiosity and

spirituality, this was one of the least reported positive aspects.

Increased personal strength and personal growth have been identified in a number of qualitative

studies (Greer et al., 2006; Kearney and Griffin, 2001; Kimura and Yamazaki, 2013; Rapanaro

et al., 2008; Skotko et al., 2011; Stainton and Besser, 1998). This theme has also been identified as

significant in a number of quantitative studies containing a measure relating specifically to ‘per-

sonal/emotional growth and maturity’ (Foster et al., 2010; Greer et al. 2006; Hastings et al., 2002,

2005; Lakhani et al., 2013; Vilaseca et al., 2014). In a quantitative study comparing mothers and

fathers, mothers reported higher personal growth (Vilaseca et al., 2013) and a longitudinal study

found that mothers of children with intellectual disabilities were more likely to perceive their

parental role as a ‘challenge’, which then became the dominant issue in their lives (Pelchat et al.,

2003).

The parents in this study spoke about focusing on the specific problems or situations and tried

to generate alternative solutions, weighing up the costs and benefits of various actions, taking

control, seeking information from professionals and mastering new knowledge and skills from

this process, which could be construed as an active coping effort that includes positive reframing

strategies (Carver et al., 1989). Revising goals and planning fosters feelings of control and

mastery and generates positive affect (happiness, joy, contentment) (Folkman and Moskowitz,

2000). Having a purpose in life, striving towards new goals and gaining control are problem-

focused coping strategies that rely on the parents’ ability to build on their personal experience

and the expertise they have built up and was also the most commonly reported theme in a

qualitative study of families with children with intellectual disabilities across the child’s lifespan

(Grant and Whittell, 2000).

The parents’ new found strength could also be explained as increased self-efficacy. An obstacle,

such as not being able to access services for their child, could motivate parents with high self-

efficacy to put in greater efforts to pursue and attain these services and exercise control over their

lives, a prerequisite for problem-focused coping. Self-efficacy beliefs have been found to enhance

some dimensions of benefit finding such as personal growth, increased sensitivity to others, and

acceptance of life imperfections (Foster et al., 2010; Luszczynska et al., 2005; Tedeschi and

Calhoun, 2004). Hastings et al. (2002) found that in mothers of children with intellectual dis-

abilities, positive reframing was found to be a predictor of their personal growth and maturity.

338 Journal of Intellectual Disabilities 21(4)

When asked, not one of the parents was able to offer an alternative word or term that summed up

the positive aspects they were describing and only one parent mentioned the word ‘coping’

throughout the interviews. However, the findings suggest that all the positive themes identified by

the parents contained differing degrees of meaning-focused coping strategies that included positive

reappraisal to deal with solving or changing the perceived cause of stress, revised identity,

increased growth, changed views of the world, and a mixture of problem-focused and support-

seeking adaptive coping strategies to obtain emotional support. These strategies are not distinct

coping styles but are parts of the ‘total coping effort’ that people can draw on to produce the best

adaptational outcomes for themselves (Park and Folkman, 1997). They were consistent with

Folkman (1997) who described four coping strategies associated with searching for and finding

positive meaning, ‘positive reappraisal, goal-directed problem-focused coping, spiritual beliefs

and practices, and the infusion of ordinary events with positive meaning all involve the activation

of beliefs, values, or goals that help define the positive significance of events’ (p. 1215).

The parents in this study found positive meaning in the stressful events of having a child with

intellectual disabilities. They used conscious cognitive effort to produce positive emotions, which

helps buffer against stress and generates experiences of positive emotion and positive affect as a

way of buffering themselves from the distress (Folkman and Moskowitz, 2000). Positive emotions

may also accelerate the individual’s ability to adapt to subsequent stressors (Ong et al., 2006)

which are seen as crucial in helping the individual adapt, cope or sustain efforts with stressful

experiences, such as those associated with caregiving over long periods of time (Folkman and

Moskowitz, 2000; Hastings et al., 2002).

Positive emotions such as happiness, pride, relief, love, hope, compassion and gratitude were

identified in these interviews but this is not unexpected. Lazarus (1993) argues that psychological

stress theory and the theory of emotion are parallel as the two share overlapping ideas and that in

addition to individuals identifying negative emotions as a reaction to stress (anger, anxiety, fright,

guilt, sadness) there are also a small number of positive emotions brought about by a different

appraisal of the personal significance of the stressor as appraised by the person who encounters it.

Experiencing positive emotions promotes people to take creative actions, ideas and social bonds,

which builds their personal resources and psychological growth such as the parent who completed

a doctor of philosophy or the parents who set up support groups, all things they would never have

considered prior to having their child.

The findings suggest that in this study, the transactional stress and coping model (Lazarus and

Folkman, 1987) would be a suitable theoretical framework to underpin the parents positivity. It has

an emphasis on meaning-focused coping, which includes positive reappraisal strategies, whereby

parents search for a meaning for their situation by drawing on their beliefs, values and goals to

search for a more favourable and positive understanding of their situation.

However, this study raises a key question of whether the positive aspects identified by the

parents are an exclusive phenomenon of parenting a child with an intellectual disability or if they

are general adaptive coping strategies used by most people in stressful situations. Almost identical

common themes to those identified by the parents in this study have been found across a wide

range of studies exploring stress-related growth and coping in individuals who have experienced

trauma, bereavement and chronic illness. Similarly, these studies report positive changes in social

relationships, perceiving improved personal strength and self-assurance, and increased spiritual

appreciation and changed priorities in life (Calhoun and Tedeschi, 2006; Joseph and Linley, 2006).

This ‘growth’ is also assumed to arise as a meaning-making process and is referred to inter-

changeably as posttraumatic growth, perceived benefits, adversarial growth and benefit finding

Beighton and Wills 339

(Park, 2013). Blacher and Baker (2007) also argue that these positive aspects are not a unique

phenomenon of parenting a child with intellectual disabilities, as findings from a comparison study

showed similar themes also reported in families with typically developing children. Therefore, it

might be hypothesized that only one theme identified by the parents in this study could be con-

sidered a ‘unique’ positive aspect of parenting a child with intellectual disabilities, ‘the positive

effect that their child has on others’.

Implications for practitioners

Practitioners should be aware that parents of children with intellectual disabilities spend the

longest time of all carer groups caring. Carers in general are known to have poorer health than

the general population but these poor health outcomes increase with the duration and intensity of

the caring role (Department of Health, 2010; Neece and Baker, 2008), making these parents

susceptible to poorer health outcomes.

Therefore, professional or therapeutic interventions should be considered to support parents to

develop effective meaning-focused coping strategies as they have been shown to increase positive

emotions. Positive emotions such as those expressed, have been found to enhance both emotional

and physical well-being, serve as resources for people coping with adversity and help people cope

with chronic stress (Folkman and Moskowitz, 2004). They have also been prospectively associated

with greater health-enhancing behaviours, such as better diet, regular exercise, and improved sleep

and this is a factor which improves health (Cohen and Pressman, 2006).

This could include psychological therapies as positive reappraisal underpins many forms of

cognitive behavioural therapy (CBT). CBTdoes not focus explicitly on the positive aspects of the

situation, it concerns replacing negative thoughts with more rational ones (Moskowitz, 2011) and

has been found to improve the well-being of parents of children with intellectual disabilities

(Hastings and Beck, 2004; Wong et al., 2011). Interventions with individuals using meaning-

making coping strategies have been found to produce higher levels of self-esteem, optimism

and self-efficacy than a control group after controlling for baseline scores (Chan et al., 2007) and

although its effectiveness for parents of children with intellectual disabilities has yet to be fully

evaluated, mindfulness training programmes have shown to help people regulate emotions and

growth in positive reappraisal coping in the general population (Garland et al., 2009). In addition, a

parent skills training intervention aimed at teaching parents ways of successfully managing their

children’s problem behaviours has been shown to enhance a parent’s sense of mastery/self-efficacy

(Hastings and Beck, 2004).

Strengths and limitations

This study contributes to the limited literature on understanding what parents perceive to be the

positive aspects of parenting a child with intellectual disabilities. To our knowledge, this is the first

qualitative article that explores what parents of children with ID report to be a positive aspect of

parenting and whether this could be considered a meaning-focused coping strategy. The themes

and language used by the parent participants have been used to inform the development of a

questionnaire instrument to be included in a survey for phase 2 of this mixed methods study. This

will explore in more detail the relationship between positive aspects and the parents’ self-reported

health and well-being. As the study was small in scale and based on a purposive sample, caution

should be taken regarding the transferability of the findings to other parents of children with

340 Journal of Intellectual Disabilities 21(4)

intellectual disabilities. Purposive sampling did, however, ensure there was a broad age range of

parents of both genders and from a variety of ethnic and social backgrounds who were at different

stages of the caring lifespan. The range of factors that may influence stress coping such as the

parent’s values, commitments, goals, personality and environmental factors (Lazarus and Folk-

man, 1987) and personality traits such as dispositional optimism, resilience or having high self-

efficacy could not be explored in the study interviews. It is possible, however, that a parent has

always had these characteristics and therefore the reported positive impact that the child has had on

the family simply reflects positive emotion-eliciting coping strategies such as positive reappraisal

that are already possessed (Ong et al., 2006). However, it is unlikely that such individual char-

acteristics would be held by all the families in this study. Parents who may not be able to identify

any positive aspects will not have volunteered to participate, and although every parent spoke

spontaneously at length about the negative aspects of parenting during the interviews, the negatives

were not taken into consideration in the analysis.

While undertaking the thematic analysis, it was not always possible to identify mutually

exclusive sub-themes; hence when assigning statements to thematic categories, some discrepancies

may have occurred. Therefore, future studies should look into refining the methods followed to

identify the themes.

Conclusion

The lives of the parents in this study were changed forever by their child’s diagnosis of intellectual

disability. However, despite every parent acknowledging the daily stresses and strains that par-

enting their child brings, they also found meaning in their situation drawing on their beliefs, values

and goals to search for a more favourable and positive understanding of their situation consistent

with the transactional model of stress and coping.

The aspects they perceived to be positive were multifaceted and related to interpersonal,

intrapersonal and child-related factors. All could be attributed in differing degrees to the use of

meaning-focused coping strategies; however intertwined were also support seeking strategies, self-

efficacy and the use of positive emotions. This demonstrates that parents use more than just a

single coping strategy to find positive meaning in their situation and they are the outcome of

complex cognitive appraisal processes rather than parents simply identifying positive aspects.

Therefore, some parents may benefit from receiving additional professional or therapeutic inter-

ventions to support them to develop adaptive coping and problem-solving skills that would help

build positive emotions and resilience. This could lead to an increase in positive well-being,

reduced depressive symptoms and increased caregiving competence.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or

publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

References

Affleck G and Tennen H (1996) Construing benefits from adversity: adaptational significance and disposi-

tional underpinnings. Journal of personality 64: 899–922.

Beighton and Wills 341

Baker BL, Blacher J and Olsson MB (2005) Preschool children with and without developmental delay:

behaviour problems, parents’ optimism and well-being. Journal of Intellectual Disability Research 49(8):

575–590.

Basu R, Hochhalter AK and Stevens AB (2015) The impact of the REACH II intervention on caregivers’

perceived health. Journal of Applied Gerontology 34(5): 590–608.

Behr SK, Murphy DL and Summers JA (1992) User’s manual: Kansas Inventory of Parental Perceptions

(KIPP). Lawrence, KS: Beach Center on families and disability.

Biesta G (2010) Pragmatism and the philosophical foundations of mixed methods research. In: Tashakkori A

and Teddlie C (eds) Handbook of Mixed Methods in Social & Behavioral Research. California: SAGE, pp.

95–117.

Blacher J and Baker B (2007) Positive impact of intellectual disability on families. Journal on Mental

Retardation 112: 330–338.

Blacher J, Begum GF, Marcoulides GA, et al. (2013) Longitudinal perspectives of child positive impact on

families: relationship to disability and culture. American Journal on Intellectual and Developmental

Disabilities 118(2): 141–155.

Boyatzis RE (1998) Transforming Qualitative Information: Thematic Analysis and Code Development.

Thousand Oaks: SAGE.

Braun V and Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology

3(2): 77–101.

Bristol MM (1984) Family resources and sucessful adaptation to autistic children. In: Schhopler E and

Meizibov GB (eds) The Effects of Autism on the Family. New York: Plenum, pp. 289–310.

Calhoun LG and Tedeschi RG (2006) The foundations of posttraumatic growth: An expanded framework. In:

Calhoun LG and Tedeschi RG (eds) Handbook of posttraumatic growth. New Jersey: Psychology Press,

pp. 3–23.

Carver CS, Scheier MF and Weintraub JK (1989) Assessing coping strategies: a theoretically based approach.

Journal of Personality and Social Psychology 56(2): 267–283.

Chan THY, Ho RTH and Chan CLW (2007) Developing an outcome measurement for meaning-making

intervention with Chinese cancer patients. Psycho-Oncology 16: 843–850.

Cheng ST, Lam LCW, Kwok T, et al. (2013) Self-efficacy is associated with less burden and more gains from

behavioral problems of Alzheimer’s disease in Hong Kong Chinese caregivers. Gerontologist 37(1):

355–364.

Cohen CA, Colantonio A and Vernich L (2002) Positive aspects of caregiving: rounding out the caregiver

experience. International Journal of Geriatric Psychiatry 17(2): 184–188.

Cohen S and Pressman SD (2006) Positive affect and health. Current Directions in Psychological Science

15(3): 122–125.

Crabtree B and Miller W (1999) A template approach to text analysis: developing and using codebooks. In:

Crabtree B and Miller W (eds) Doing Qualitative Research. Newbury Park: SAGE, pp. 163–177.

Creswell J and Clark VL (2007) Choosing a mixed methods design. Designing and Conducting Mixed

Methods Research. Thousand Oaks, CA: SAGE, pp. 53–106.

Department of Health (2010) Recognised, valued and supported: next steps for the carers strategy. Strategy,

London: HM Government, pp. 1–58.

Emerson E and Hatton C (2008) Estimating Future Need for Adult Social Care Services for People with

Learning Disabilities in England. Lancaster: Centre for Disability Research.

Emerson E and Hatton C (2014) Health Inequalities and People with Intellectual Disabilities. New York:

Cambridge University Press.

Emerson E, Hatton C, Robertson J, et al. (2012) People with learning disabilities in England 2011. Durham.

Improving Health and Lives: Learning Disability Observatory.

Esdaile SA (2009) Valuing difference: caregiving by mothers of children with disabilities. Occupational

Therapy International 16(2): 122–133.

Ezzy D (2002) Qualitative Analysis: Practice and Innovation. Crows Nest: Allen & Unwin.

342 Journal of Intellectual Disabilities 21(4)

Folkman S (1997) Positive psychological states and coping with severe stress. Social Science and Medicine

45(8): 1207–1221.

Folkman S and Moskowitz JT (2000) Stress, positive emotion, and coping. Current Directions in Psycho-

logical Science 9(4): 115–118.

Folkman S and Moskowitz JT (2004) Coping: pitfalls and promise. Annual Review of Psychology 55:

745–774.

Foster RH, Kozachek S, Stern M, et al. (2010) Caring for the caregivers: an investigation of factors related to

well-being among parents caring for a child with smith-magenis syndrome. Journal of Genetic Counseling

19(2): 187–198.

Fredrickson BL (2001) The role of positive emotions in positive psychology. The broaden-and-built theory of

positive emotions. American Psychologist 56(3): 218–226.

Fredrickson BL (2004) The broaden-and-build theory of positive emotions. Philosophical Transactions of the

Royal Society of London. Series B, Biological Sciences 359(1449): 1367–1378.

Fredrickson BL (2011) Positivity. 2nd ed. New York: Crown Publishing Group.

Garland E, Gaylord S and Park J (2009) The role of mindfulness in positive reappraisal. Explore: The Journal

of Science and Healing 5(1): 37–44.

Grant G and Whittell B (2000) Differentiated coping strategies in families with children or adults with

intellectual disabilities: the relevance of gender, family composition and the life span. Journal of Applied

Research in Intellectual Disabilities 13(4): 256–275.

Grant G, Ramcharan P, McGrath M, et al. (1998) Rewards and gratifications among family cregivers: towards

a refined model of caring and coping. Journal of Intellectual Disability Research 42(1): 58–71.

Greer F, Grey I and McClean B (2006) Coping and positive perceptions in Irish mothers of children with

intellectual disabilities. Journal of intellectual disabilities 10(3): 231–248.

Hartrick Doane G and Varcoe C (2005) Toward compassionate action: pragmatism and the inseparability of

theory/practice. Advances in Nursing Science 28(1): 81–90.

Hastings R, Beck A and Hill C (2005) Positive contributions made by children with an intellectual

disability in the family: mothers’ and fathers’ perceptions. Journal of Intellectual Disabilities: JOID

9(2): 155–165.

Hastings RP and Beck A (2004) Practitioner review: stress intervention for parents of children with intel-

lectual disabilities. Journal of Child Psychology and Psychiatry and Allied Disciplines 45(8): 1338–1349.

Hastings RP and Taunt H (2002) Positive perceptions in families of children with developmental disabilities.

American Journal on Mental Retardation 107(2): 116–127.

Hastings RP, Allen R, McDermott K, et al. (2002) Factors related to positive perceptions in mothers of

children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 15(3):

269–275.

Helff C and Glidden LM (1998) More positive or less negative? Trends in research on adjustment of families

rearing children with developmental disabilities. Mental Retardation 36(6): 457–464.

Helgeson VS, Reynolds K and Tomich PL (2006) A meta-analytic review of benefit finding and growth.

Journal of Consulting and Clinical Psychology 74(5): 797–816.

Hill Rice V (ed.) (2012) Handbook of Stress, Coping and Health. 2nd ed. Thousand Oaks: SAGE.

Holroyd J (1974) The questionnaire on resources and stress. An instrument to measure family response to a

handicapped member. Journal of Community Psychology 2: 92–94.

Horowitz A (1985) Family caregiving in the frail elderly. In: Maddox D (ed.) Annual Review of Gerontology

and Geriatrics, New York: Springer, pp. 174–246.

Joseph S and Linley PA (2006) Growth following adversity: theoretical perspectives and implications for

clinical practice. Clinical Psychology Review 26(8): 1041–1053.

Kauser S, Jevne RF and Sobsey D (2003) Hope in families of children with developmental disabilities.

Journal on Developmental Disabilities 10(1): 35–46.

Kearney P and Griffin T (2001) Between joy and sorrow: being a parent of a child with developmental

disability. Journal of Advanced Nursing 34(5): 582–592.

Beighton and Wills 343

Kenny K and McGilloway S (2007) Caring for children with learning disabilities: an exploratory study of

parental strain and coping. British Journal of Learning Disabilities 35: 221–228.

Kimura M and Yamazaki Y (2013) The lived experience of mothers of multiple children with intellectual

disabilities. Qualitative Health Research 23(10): 1307–1319.

King LA and Patterson C (2000) Reconstructing life goals after the birth of a child with Down’s syndrome:

finding happiness and growing. International Journal of Rehabilitation and Health 5(1): 17–30.

Kvale S (2007) Doing Interviews. London: SAGE Publications, Ltd.

Lakhani A, Gavino I and Yousafzai A (2013) The impact of caring for children with mental retardation on

families as perceived by mothers in Karachi, Pakistan. JPMA. The Journal of the Pakistan Medical

Association 63(12): 1468–1471.

Lambert NM, Graham SM and Fincham FD (2009) A prototype analysis of gratitude: varieties of gratitude

experiences. Personality and Social Psychology Bulletin 35(9): 1193–1207.

Lazarus RS (1993) From psychological stress to the emotions: a history of changing outlooks. Annual Review

of Psychology 44: 1–21.

Lazarus RS and Folkman S (1987) Transactional theory and research on emotions and coping. European

Journal of Psychology 1: 141–160.

Lopez-Martinez A, Esteve-Zarazaga R and Ramirez-Maestre C (2008) Perceived social support and coping

responses are independent variables explaining pain adjustment among chronic pain patients. Journal of

Pain 9(4): 373–379.

Luszczynska A, Mohamed N and Schwarzer R (2005) Self-efficacy and social support predict benefit finding

12 months after cancer surgery: the mediating role of coping strategies. Psychology, Health and Medicine

10(4): 365–375.

Mays N and Pope C (2008) Quality in qualitative health research. In: Pope C and Mays N (eds) Qualitative

Research in Health Care. 4th ed. Oxford, England: Blackwell Publishing, pp. 82–101.

McConnell D, Savage A, Sobsey D, et al. (2015) Benefit-finding or finding benefits? The positive impact of

having a disabled child. Disability & Society 30(1): 29–45.

Miodrag N and Hodapp RM (2010) Chronic stress and health among parents of children with intellectual and

developmental disabilities. Current Opinion in Psychiatry 23(5): 407–411.

Moskowitz JT (2011) Coping interventions and the regulation of positive affect. In: Folkman S (ed.) The

Oxford Handbook of Stress, Health & Coping. Oxford: Oxford University Press, pp. 407–427.

Neece C and Baker B (2008) Predicting maternal parenting stress in middle childhood: the roles of child

intellectual status, behaviour problems and social skills. Journal of Intellectual Disability Research

52(12): 1114–1128.

Nolan M, Grant G and Keady J (1996) Understanding Family Care: A Multidimensional Model of Caring and

Coping. Buckingham.: Open University Press.

Ong AD, Bergeman CS, Bisconti TL, et al. (2006) Psychological resilience, positive emotions, and successful

adaptation to stress in later life. Journal of Personality and Social Psychology 91(4): 730–749.

Pargament KI, Smith BW, Koenig HG, et al. (1998) Patterns of positive and negative religious coping with

major life stressors. Journal for the Scientific Study of Religion 37(4): 710.

Park CL (2010) Making sense of the meaning literature: an integrative review of meaning making and its

effects on adjustment to stressful life events. Psychological Bulletin 136(2): 257–301.

Park CL (2011) Meaning, coping and health & wellbeing. In: Folkman S (ed.) The Oxford Handbook of

Stress, Health & Coping. Oxford: Oxford University Press, pp. 227–241.

Park CL (2013) The meaning making model: a framework for understanding meaning, spirituality, and

stress-related growth in health psychology. The European Health Psychologist 15(2): 40–47.

Park CL and Folkman S (1997) Meaning in the context of stress and coping. Review of General Psychology

1(2): 115–144.

Patton M (2002) Qualitative Research & Evaluation Methods. 3rd ed. Thousand Oaks: SAGE.

Pelchat D, Lefebvre H and Perreault M (2003) Differences and similarities between mothers’ and fathers’

experiences of parenting a child with a disability. Journal of Child Health Care 7(4): 231–247.

344 Journal of Intellectual Disabilities 21(4)

Rapanaro C, Bartu A and Lee AH (2008) Perceived benefits and negative impact of challenges encountered in

caring for young adults with intellectual disabilities in the transition to adulthood. Journal of Applied

Research in Intellectual Disabilities 21: 34–47.

Reker GT, Peacock EJ and Wong PTP (1987) Meaning and purpose in life and well-being: a life-span per-

spective. Journal of Gerontology 42(1): 44–49.

Scallan S, Senior J and Reilly C (2011) Williams syndrome: daily challenges and positive impact on the

family. Journal of Applied Research in Intellectual Disabilities 24(2): 181–188.

Scorgie K, Wilgosh L, Sobsey D, et al. (2001) Parent life management and transformational outcomes when a

child has down syndrome. International Journal of Special Education 16(2): 57–68.

Skinner DG, Correa V, Skinner M, et al. (2001) Role of religion in the lives of latino families of young

children with developmental delays. American Journal on Mental Retardation 106(4): 297–313.

Skotko BG, Levine SP and Goldstein R (2011) Having a son or daughter with down syndrome: perspectives

from mothers and fathers. American Journal of Medical Genetics. Part A 155(10): 2335–2347.

Snyder C and Dinoff BL (1999) Coping. Where have you been? In: Snyder C (ed.) Coping. The Psychology of

What Works. Oxford: Oxford University Press, pp. 3–17.

Stainton T and Besser H (1998) The positive impact of children with an intellectual disability on the family.

Journal of Intellectual and Developmental Disability 23(1): 57–70.

Taylor SE (1983) Adjustment to threatening events. American Psychologist 38(11): 1161–1173.

Tedeschi RG and Calhoun LG (2004) Posttraumatic growth: conceptual fundations and empirical evidence.

Psychological Inquiry 15: 1–18.

Thoits PA (1995) Stress, coping, and social support processes: where are we? What next? Journal of Health

and Social Behavior (Extra Issue): 53–79.

Troy AS, Wilhelm FH, Shallcross AJ, et al. (2010) Seeing the silver lining: cognitive reappraisal ability

moderates the relationship between stress and depressive symptoms. Emotion 10(6): 783–795.

Turnbull H, Guess D and Turnbull AP (1988) Vox populi and baby doe. Mental Retatdation 26(3): 127–132.

Valentine D, McDermott S and Anderson D (1998) Mothers of adults with mental retardation: is race a factor

in perceptions of burdens and gratifications? Families in Society: The Journal of Contemporary Human

Services 79(6): 577–584.

Vilaseca R, Ferrer F and Guardia Olmos J (2013) Gender differences in positive perceptions, anxiety, and

depression among mothers and fathers of children with intellectual disabilities: a logistic regression

analysis. Quality & Quantity 48(4): 2241–2253.

Wong DFK, Poon A and Kwok YCL (2011) The maintenance effect of cognitive-behavioural treatment

groups for the Chinese parents of children with intellectual disabilities in Melbourne, Australia: A 6-month

follow-up study. Journal of Intellectual Disability Research 55(11): 1043–1053.

Wood AM, Joseph S and Linley PA (2007) Coping style as a psychologist resource of grateful people. Journal

of Social and Clinical Psychology 26: 1076–1093.

Woodman A and Hauser-Cram P (2013) The role of coping strategies in predicting change in parenting

efficacy and depressive symptoms among mothers of adolescents with developmental disabilities. Journal

of Intellectual Disability Research 57(6): 513–530.

Wrosch C (2010) Self-regulation of unattainable goals and pathways to quality of life. In: Folkman S (ed.)

Oxford Handbook of Stress, Health, and Coping. New York: Oxford University Press, pp. 319–333.

Beighton and Wills 345