Assignment: Sampling Considerations Discussion

Assignment: Sampling Considerations Discussion

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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).