Chapter 2: Literature Review

The following chapter will review existing literature that explores intellectual disabilities,

ethic of care, and leisure. These sections will each be broken into subsections that further

describe how these topics relate to the purpose of this research study. Gaps within the existing

research will be identified within each section. This section will provide insight to how young

women’s leisure experiences and meanings may be impacted as a result of having a sibling

whom is diagnosed with an intellectual disability.

Intellectual Disability

A person who is intellectually disabled is reported to have an IQ level of below 70,

difficulty with abstract thinking and problem solving, and trouble performing basic daily tasks

independently (Coon & Mitterer, 2010). There are varying types of intellectual disabilities and

the extremity of the intellectual disability depends on the diagnosis of the disability and the

environment in which the person lives (Chambers, 2007; Coon & Mitterer, 2010). Intellectual

disabilities have many different causes. Coon and Mitterer (2010) state that about fifty percent of

all intellectual disabilities are related to physical disorders or are as a result of natural processes

such as fetal damage, metabolic disorders, birth injuries, genetic abnormalities, malnutrition, or

exposure to toxins at a young age. Some individuals may not have any biological reasoning for

their disability at all; the disability could simply be a result of a poor living environment (Coon

& Mitterer, 2010).

Some individuals diagnosed with an intellectual disability may also have accompanying

physical characteristics such as individuals diagnosed with Down syndrome (Aksoy & Yildirim.

2008). Hames (2005) found that the behaviours of individuals who have a visible disability as

well as an intellectual disability were generally more understood and accepted in society. If

people can visibly see that a person has a disability they are more likely to understand why a

Chapter 2: Literature Review

person is behaving in a socially unacceptable manner (Aksoy & Yildirim, 2008; Hames, 2005).

Individuals diagnosed with intellectual disabilities that have no accompanying physical features,

such as ADHD, are harder for society members to view as disabled. As a result any socially

unacceptable behaviour associated with the individual may be open to public ridicule because the

disability is not physically visible (Aksoy & Yildirim, 2008; Hames, 2005).

The needs of people who are intellectually disabled vary depending on the severity and

diagnosis of the individual person’s disability (Coon & Mitterer, 2010). General needs of persons

with an intellectual disability vary depending on the severity of their disability (Coon & Mitterer,

2010). Individuals whom are diagnosed with an intellectual disability may encounter social

barriers (Bigby, 1997). Some individuals need assistance with networking, advocating their

rights, engaging in conversation and knowing what is and is not appropriate social

etiquette/mannerisms (Bigby, 1997; Coon & Mitterer, 2010; Mactavish, MacKay, Iwasaki, &

Betteridge, 2007). This assistance may help eliminate potential social barriers for this population

(Bigby, 1997; Coon & Mitterer, 2010). Other individuals may face different barriers related to

lack of knowledge, lack of ability, lack of access, lack of finances, lack of skill, and lack of trust

(Bigby, 1997; Mactavish, MacKay, Iwasaki, & Betteridge, 2007). These individuals may need

assistance with personal care, decision making, financial management, budgeting, finding

employment, medical administration, education on their rights, accessing trust worthy respite

services and programs, transportation, time management, and menu-planning (Bigby, 1997;

Coon & Mitterer, 2010; Mactavish, MacKay, Iwasaki, & Betteridge, 2007).

Mother’s are often the parental figure that is responsible for meeting their child’s needs

regardless if they have an intellectual disability or not (Greenberg, Seltzer, & Greenley, 1993;

Heller, Caldwell, & Factor, 2007; Trussell & Shaw, 2007). According to Heller, Caldwell, and

Chapter 2: Literature Review

Factor (2007) fathers spend less time providing care for their child whom has an intellectual

disability; in turn this limits their participation in supporting their child’s needs.

Mothers of a Child with an Intellectual Disability

Heller, Caldwell, and Factor (2007) determined that a mother of a child with an intellectual

disability experiences more stress as a result of her child’s additional needs when compared to

mothers of children without disabilities. Mothers who support a child with a disability are more

prone to develop health problems, such as depression, as a result of stress due to care giving

responsibilities (Heller, Caldwell, & Factor, 2007).

Four sources of stress that may impact a mother’s perceived gratification and stress of

providing care for their child whom is diagnosed with an intellectual disability are (1) external

burdens out of the mother’s control such as finances, “(2) the child’s problematic behaviours, (3)

the mother’s other, if any, care giving responsibilities, and (4) the mother’s declining health

(Greenberg, Seltzer, & Greenley 1993, p.545)”. Additional studies suggest that sufficient access

to good quality respite services, education and training for providing care to a child with a

disability, family support and social networks, the visibility of their child’s disability, the degree

of their child’s disability, as well as the amount of external access to funding impacts the

mothers gratifications and stressors associated with their care giving role (Hames, 2005;

Mactavish, MacKay, Iwasaki, & Betteridge, 2007; Mactavish & Schleien, 2004; Nankervis,

Rosewarne, & Vassos, 2011).

Nankervis, Rosewarne, and Vassos’s (2011) found that care providers cited the importance of

social networks, social support, and respite services as factors that reduced stress associated with

care giving responsibilities. These three forms of support reduced parents’ feelings of stress by

providing them with opportunities to share their child’s care with other people (Greenberg, J.,

Chapter 2: Literature Review

Seltzer, M., & Greenley, 1993; Heller, Caldwell, & Factor, 2007; Nankervis, Rosewarne, &

Vassos, 2011). In turn, this relieved them of some their caregiver responsibility (Greenberg, J.,

Seltzer, M., & Greenley, 1993; Heller, Caldwell, & Factor, 2007; Nankervis, Rosewarne, &

Vassos, 2011).

Respite services and strong social support networks are not always accessible as a result of

limited resources such as funding, adequate programming, social support, and well trained and

educated professionals (Emira & Thompson, 2011). This is a cause of concern for mothers of

children with an intellectual disability in relation to the future wellbeing and care provision of

their child. This is especially problematic as mother’s themselves are aging and experiencing

poor health (Greenberg, Seltzer, & Greenley,1993; Heller, Caldwell, & Factor, 2007).

Future Planning

During the early to mid-nineties, children diagnosed with a disability were

institutionalized at a young age and were not given the same social rights as non-disabled

individuals (Mactavish & Schleien, 1998; Nankervis, Rosewarne, & Vassos, 2011). Individuals

with disabilities were not valued members of society during this time period (Mactavish &

Schleien, 1998; Nankervis, Rosewarne, & Vassos, 2011). Being institutionalized at a young age

limited the social experiences persons with disabilities played within their communities

(Mactavish & Schleien, 1998; Nankervis, Rosewarne, & Vassos, 2011). This lack of inclusion

further limited a sense of belonging individuals diagnosed with a disability felt within their local

community (Mactavish & Schleien, 1998; Nankervis, Rosewarne, & Vassos, 2011). The

devaluation of persons diagnosed with a disability gained public recognition and people have

since gathered to advocate for their rights (Mactavish & Schleien, 1998; Nankervis, Rosewarne,

& Vassos, 2011). As a result of the public advocacy, institutions closed and began living at home

Chapter 2: Literature Review

with their families (Bigby, 1997; Greenberg, Seltzer, & Greenley, 1993; Heller, Caldwell, &

Factor, 2007; Mactavish & Schleien, 1998; Nankervis, Rosewarne, & Vassos, 2011).

Upon the elimination of institutions, individuals diagnosed with disabilities started living

longer, healthier lives (Nankervis, Rosewarne, & Vassos, 2011). Public advocates, mostly

family of the individual or close family friends, defended the rights of persons with disabilities

and demanded that they had equal opportunity to actively engage within their local communities

(Heller, Caldwell, & Factor, 2007; Mactavish & Schleien, 1998; Nankervis, Rosewarne, &

Vassos, 2011). As a result of public advocates, the general public began to recognize that

individuals with disabilities were equal members of society (Heller, Caldwell, & Factor, 2007;

Nankervis, Rosewarne, & Vassos, 2011). This realization led to the acceptance of persons with

disabilities into their local communities and access to the human rights they were entitled to

(Heller, Caldwell, & Factor, 2007; Nankervis, Rosewarne, & Vassos, 2011). This elevated level

of public acceptance allowed more opportunities for persons with disabilities to access programs

and health care/provision within their local communities (Nankervis, Rosewarne, & Vassos,

2011). These programs and health resources helped extend the lives of persons with disabilities

and aided them in enhancing their quality of life (Heller, Caldwell, & Factor, 2007; Mactavish &

Schleien, 1998; Nankervis, Rosewarne, & Vassos, 2011). For example, in institutions there was

little stimulation and persons with disabilities had minimal access to recreation activities (Heller,

Caldwell, & Factor, 2007; Nankervis, Rosewarne, & Vassos, 2011). When institutions were

closed individuals entered their local communities were several recreation activities were made

available to them (Heller, Caldwell, & Factor, 2007; Nankervis, Rosewarne, & Vassos, 2011;

Payne, Ainsworth, & Godbey, 2010). Participation in these recreation activities ultimately led to

skill development and opportunities for individuals to enhance their quality of life, overall

Chapter 2: Literature Review

health, and well-being (Payne, Ainsworth, & Godbey, 2010). Particularly, with individuals

physical and emotional health as they became accepted and active members of their local

communities (Heller, Caldwell, & Factor, 2007; Nankervis, Rosewarne, & Vassos, 2011; Payne,

Ainsworth, & Godbey, 2010).

Majority of individuals diagnosed with a disability will live at home with their families

well into their late adulthood (approximately seventy-five percent) (Heller, Caldwell, & Factor,

2007). Parents, as a result are now providing care for their children that are diagnosed with an

intellectually disability from home; well into their child’s late adulthood (Mactavish & Schleien,

1998; Nankervis, Rosewarne, & Vassos, 2011). Parents struggle to meet the demands of their

child’s needs as a result of their disability especially as they themselves begin to age (Greenberg,

Seltzer, & Greenley, 1993; Heller, Caldwell, & Factor, 2007; Mactavish & Schleien, 1998;

Nankervis, Rosewarne, & Vassos, 2011). Aging parents may experience health problems of

their own that limit their ability to provide care to their adult child diagnosed with an intellectual

disability (Heller, Caldwell, & Factor, 2007).

The heightened stress about the future wellbeing of their adult child is particularly

evident with mothers (Greensberg, Seltzer, & Greenly, 1993). They are concerned about who

will provide care to their child when they are no longer able meet their child’s needs as a result

of their own declining health (Greensberg, Seltzer, & Greenly; 1993; Mactavish & Schleien,

1998; Nankervis, Rosewarne, & Vassos, 2011). In current research, it has been determined that

siblings are most likely to continue the care their siblings require when their parents are no

longer able to do so (Aksoy & Yildirim, 2008; Arnorld, Heller, & Kramer, 2012; Bigby, 1997;

Heller & Arnorld, 2010; Heller, Caldwell, & Factor, 2007; Mactavish & Schleien, 1998;

Nankervis, Rosewarne, & Vassos, 2011; Orsmond & Seltzer, 2000).

Chapter 2: Literature Review

Siblings

Moyson and Roeyers (2012) studied the quality of life of children whom had a sibling

diagnosed with an intellectual disability and identified nine domains of quality of life. The nine

domains included: joint activities, mutual understanding, private time, acceptance, forbearance,

trust in their well-being, exchanging experiences, social support, and dealing with the outside

world (Moyson & Roeyers, 2012). The children stated that they enjoyed spending time with and

caring for their sibling, but they also desired time to be away from their sibling (Moyson &

Roeyers, 2012). This time away from their sibling was an opportunity for them to be a child

without the responsibility of being a sibling caring for their brother/sister diagnosed with an

intellectual disability (Moyson & Roeyers, 2012). Moyson and Roeyers (2012) found that

children wanted to see their siblings succeed and were concerned about their sibling’s future.

Arnold, Heller, and Kramer (2012) discovered that non-disabled children want to be

incorporated in their sibling’s, whom is diagnosed with a disability, life and future plans.

Existing studies have found that children who are not diagnosed with a disability often assist

their parents with the care of their sibling when their parents can no longer meet their siblings

needs (Aksoy & Yildirim, 2008; Arnorld, Heller, & Kramer, 2012; Bigby, 1997; Heller &

Arnorld, 2010; Heller, Caldwell, & Factor, 2007; Mactavish & Schleien, 1998; Nankervis,

Rosewarne, & Vassos, 2011; Orsmond & Seltzer, 2000). However, knowledge in regards to the

extent that children want to be involved in their siblings lives is unknown (Moyson & Roeyers,

2013). Existing research has focused solely on the parental perspective and how parents perceive

their children’s feelings and thoughts (Chambers, 2007; Moyson & Roeyers, 2012). This method

of data collection has left the perspective of the non-disabled children, within the family context,

without a voice in the research process (Aksoy & Yildirim, 2008; Bigby, 1997; Chambers, 2007;

Chapter 2: Literature Review

Heller & Arnold, 2010; Moyson & Roeyers, 2012). As a result, the child’s perspective of

growing up with a sibling whom is diagnosed with an intellectual disability is a gap within the

majority of existing research (Arnorld, Heller, & Kramer, 2012; Bigby, 1997; Heller & Arnorld,

2010; Heller, Caldwell, & Factor, 2007; Mactavish & Schleien, 1998; Nankervis, Rosewarne, &

Vassos, 2011; Orsmond & Seltzer, 2000). Particularly, in regards to how having a sibling with a

disability has impact the child’s life and the child’s willingness to be involved in their siblings

future plans (Heller & Arnold, 2010; Heller, Caldwell, & Factor, 2007; Orsmond & Seltzer,

2000). It may benefit children, whom have a sibling with an intellectual disability, to incorporate

them in the future planning of their siblings lives to fully prepare them for their future roles as

care providers (Bigby, 1997; Chambers, 2007; Heller & Arnold, 2010; Moyson & Roeyers,

2012). As well, including non-disabled children into future studies would provide researchers

with another valuable perspective of the demands and support children diagnosed with

intellectual disabilities require (Orsmond & Seltzer, 2000).

Ethic of Care

Men and Women encounter countless gender stereotypes on a daily basis which shape the

roles they play within society (Parry, 2007; Henderson et al., 1996). Parry (2007) refers to

gender as a “social construction....that humans produce and reproduce in their social interactions

as opposed to it being biologically determined, as sex is (p.142)”. If a person’s sex is female it is

expected, by society, that this person will portray feminine qualities and have a feminine role

within society (Henderson et al., 1996). That is, women are expected to demonstrate certain roles

and qualities within society that the patriarchal system has defined as feminine (Henderson et al.,

1996). Qualities such as; passiveness, gentleness, becoming a wife, sustaining the home,

nurturing her husband and children, obedience, frailty, being pretty, and bearing children are

Chapter 2: Literature Review

deemed to be essential to the construction of femininity (Henderson et al, 1996). All of these

feminine roles incorporate an aspect of providing care, meeting the needs of others, and

submissiveness. If females portray these qualities and roles they are praised for their behaviour

(Henderson et al., 1996). If women demonstrate behaviour that is not depicted as feminine by

society they may be publicly ridiculed for resisting gendered social norms (Parry, 2007).

Gilligan’s concept of ethic of care impacts women’s moral development which begins

they enter adolescents (Coon & Mitterer, 2010; Witt & Caldwell, 2005). Ethic of care explains a

female’s moral obligation to meet the needs of others prior to meeting her own needs (Henderson

et al., 1996; Jordan, 2007; Parry, 2007). Consequently, women are often limited in the time they

have to meet their own needs. For example, Trussell and Shaw (2007) found that women often

felt “constrained by their ethic of care” (p. 143). Mothers would often ignore their own needs

completely to facilitate the needs of her family (Shaw & Shannon, 2008; Trussell & Shaw,

2007). In turn, women may feel guilty if they take time to meet their own needs and may ignore

them entirely as they prioritize to meet the needs of their family prior to their own needs

(Henderson et al., 1996; Jordan, 2007; Parry, 2007; Shaw & Shannon, 2008; Trussell & Shaw,

2007).

Young Women and Ethic of Care

A person’s sex is often mistaken as an identifier of what gender characteristics the person

will portray in their daily lives (Perry-Burney & Takyi, 2002; Shannon & Shaw 2008). People

begin acquiring knowledge about the social roles and behaviours they are expected to

demonstrate, based on their sex, at a young age (Coon & Mitterer, 2010; Perry-Burney & Takyi,

2002; Witt & Caldwell, 2005). During the stage of adolescent development individuals mature

and begin forming their opinions of what is right and wrong based on their personal values

Chapter 2: Literature Review

(Coon & Mitterer, 2010; Jordan, 2007; Perry-Burney & Takyi, 2002). At the conventional stage

of development adolescent girls are more likely to base their moral decisions on the basis of

appeasing others, the input of a person of authority, their personal values, and societal laws/rules

(Coon & Mitterer, 2010; Witt & Caldwell, 2005).

Social media, peers, family, and daily interaction all play a role in how a young woman

perceives and understands gender (Witt & Caldwell, 2005). In our patriarchal society individuals

begin understanding the concept of gender appropriateness as young as eighteen months (Serbin,

Connor, Burchardt, & Citron, 1979). In particular, young women specifically are constrained by

an ethic of care and are encouraged to present themselves in a feminine manner (Henderson et

al., 1996; Parry, 2007; Perry-Burney, & Takyi, 2002). Prior to late adolescence, parents play

have a significant role in shaping their daughter’s moral development and gender identity (Coon

& Mitterer, 2010; Witt & Caldwell, 2005). Positive, actively engaged, supportive, and

authoritarian parents are essential for the future health and well-being of their child (Witt &

Caldwell, 2005). Youth rely on their parents for guidance, mental and physical support,

education, care provision, and role modeling (Perry-Burney & Takyi, 2002; Witt and Caldwell,

2005).

Coon and Mitterer (2010) and Jordan (2007) discuss Gilligan’s concept of ethic of care

and how it impacts women in relation to their moral development. Gilligan found that women

are more likely to make their moral decisions based on appeasing others so they can maintain

healthy relationships and stay connected to people that they care about (Jordan, 2007; Witt and

Caldwell, 2005). Shannon and Shaw (2008) found that young women viewed their mothers as

role models during their adolescents. Young women learned valuable lessons from their mothers

in regards to leisure participation and their social roles (Shannon & Shaw, 2008). Shannon and

Chapter 2: Literature Review

Shaw (2008) discovered that mothers of young women encouraged their daughters to partake in

various leisure pursuits. They also discovered that mothers enjoyed providing their daughters

with a variety of different opportunities so that their daughters could enhance their skills

(Shannon & Shaw, 2008). While mothers organized their daughters leisure schedules they failed

to organize their own leisure lifestyles (Shannon & Shaw, 2008). In doing so, mothers ignored

their own leisure needs and interests to provide their daughters with more leisure opportunities

(Shannon & Shaw, 2008).

When mothers would ignore their own leisure needs to put the needs of their daughters

first they unknowingly taught their daughters that this was an acceptable parental responsibility

(Shannon & Shaw, 2008). Young women observed their mother’s lack of leisure participation

while their mothers facilitated and organized family leisure pursuits (Shannon & Shaw, 2008).

Shannon and Shaw (2008) found that when these young women became mothers they abandoned

their own leisure interests to put the leisure interests of their family before their own. In turn,

these young women modeled the observed behaviour their mothers unknowingly taught them

when they became mothers themselves (Shannon & Shaw, 2008). The concept of mother’s

modeling behaviours to their daughters appears to be a cycle that continues from one generation

to the next when young women become mother’s themselves (Shannon & Shaw, 2008).

A young woman may whom has a sibling that is diagnosed with an intellectual disability

may begin modeling her mother’s behaviour prior to becoming a mother herself (Shannon &

Shaw, 2008). Young woman may feel obligated to assist her mother with her siblings care

(Moyson & Roeyers, 2012; Orsmond, & Seltzer, 2000; Shannon & Shaw, 2008). Young women

may begin performing ‘motherly duties’ (when aiding their mothers with their siblings care)

prior to becoming mothers themselves. A young woman may feel obligated to provide their

Chapter 2: Literature Review

sibling with care as a result of their mother’s modeled behaviour and their own ethic of care

(Moyson & Roeyers, 2012; Shannon & Shaw, 2008).

Young Women, Ethic of Care, and a Sibling Diagnosed with an Intellectual Disability

Heller and Arnold (2010) found that individuals that have a sibling with an intellectual

disability felt they were well educated about the additional needs their sibling. Individuals

expressed having a good relationship with their sibling, but were frustrated at times with their

siblings unpredictable behaviour associated with their disability (Moyson & Royers, 2011).

Heller and Arnold’s (2010) also found that female siblings were more willing to provide care for

their sibling with a disability; especially once their parents were declining in health or deceased.

Consequently, children with a sibling that is diagnosed with an intellectual disability

often internalize their own distress instead of sharing it with their parents (Giallo et al., 2011).

As they do not want to further burden their parents by demanding their time and energy (Askoy

& Yildirim, 2008; Giallo et al., 2011; Hames, 2005; Moyson & Royers, 2011). Children are well

aware of the stress and additional care their parents provide their sibling whom is diagnosed with

a disability (Giallo et al., 2011). Children that internalize their own distress may be seen as

prioritizing the needs of their sibling over their own; demonstrating an ethic of care towards their

sibling (Giallo et al., 2011). This may be particularly evident for siblings who are young women.

Young women may feel obligated to help their parents support the needs of their sibling

as a result of societal expectations, their ethic of care, and learned behaviour modeled by their

own mothers (Shannon & Shaw, 2008). The young women guilty engaging in activities that do

not include their sibling diagnosed with a disability (Henderson et al., 1996; Moyson & Roeyers,

2011). As a result, young women may have limited access to their own unobligated time due to

time spent assisting their parents in providing care for their sibling (Parry, 2007; Jordan, 2007;

Chapter 2: Literature Review

Moyson & Roeyers, 2011). In particular, this may impact young women’s access to their own

leisure time.

Leisure

Young women who do not have access to their own time separate from other life

obligations may not be able to engage in meaningful leisure activities (Jordan, 2007). Trenberth

(2005) defines leisure as “free or unobligated time (p.2)”. Jordan (2007) expands on this

definition stating that leisure is an activity not associated with work that an individual voluntarily

chooses to partake in based on their own personal interests. If individuals enroll in self-chosen

leisure pursuits that meet their skills level and challenge them to improve their skills then they

are more likely to experience the benefits leisure participation can provide them with

(Abuhamdeh & Csikszentmihalyi, 2011; Jordan, 2007; Payne, Ainsworth, & Godbey, 2010).

Leisure pursuits have the potential to reduce stress, strengthen relationships, develop

individuals’ skills, opportunities to learn life skills, and increase overall health and well-being

(Mactavish & Schleien, 2004; Payne, Ainsworth, & Godbey, 2010). However, barriers exist in

accessing leisure experiences can be a source of stress for some people that face these barriers

(Witt & Caldwell, 2010). Barriers include: limited accessibly to: funding, social networks,

transportation, respite services, leisure facilities, adequate programs and staff, time, social

stereotypes, social stigmas, and ability (Jordan, 2007; Payne, Ainsworth, & Godbey, 2010; Witt

& Caldwell, 2010). Leisure can be a source of stress reduction and stress creation depending on

the accessibility of the activity and the level of interest the individual has to willingly engage in

the activity (Abuhamdeh & Csikszentmihalyi, 2011).

Women and Leisure

Chapter 2: Literature Review

Young women who pursue self-chosen leisure activities are more likely to have healthier

lives and rank their quality of life higher than those that do not (Mactavish, MacKay, Iwasaki, &

Betteridege, 2007; Trenberth, 2005). However, many factors are associated with the limited time

women spend dedicate to self-chosen leisure pursuits. Living in a patriarchal society hinders

women’s leisure involvement (Henderson et al., 1996). Women are only supposed to engage in

activities that society depicts as feminine (Henderson et al., 1996 & Parry, 2007). If women

partake in activities that are deemed as masculine they are subjected to public ridicule and

viewed as resisting social norms (Henderson et al., 1996). Women are further constrained in

accessing leisure by obligations and responsibilities of providing care for their families

(Henderson et al., 1996; Parry, 2007; Trussell & Shaw, 2007).

According to Trussell and Shaw (2007) mothers are more likely to facilitate family

leisure than fathers. In the traditional family, father’s are more likely to be the breadwinners of

the family as their primary role to support their family economically (Heller, Caldwell, & Factor,

2007; Trussell & Shaw, 2007). In fulfilling this role many mothers abandon their leisure

interests they had prior to bearing children (Trussell & Shaw, 2007; Shannon & Shaw, 2008).

Parry (2007) stated that women do not feel obligated to their own leisure time and they often feel

guilty facilitating their own leisure lifestyles (Shannon & Shaw, 2008). Women are dedicated to

providing opportunities for their children and family to partake in leisure experiences together

(Parry, 2007; Shannon & Shaw, 2008). As a result, mothers feel guilty facilitating their own

leisure lifestyles when they could be facilitating the leisure lifestyles of their families (Parry,

2007; Shannon & Shaw, 2008).

A daughter that observes her mother’s dedication to facilitating family leisure may also

abandon their individual leisure needs to assist her mother in meeting the leisure needs of the

Chapter 2: Literature Review

family (Shannon & Shaw, 2008). Shannon and Shaw (2008) found that daughters observed their

mother’s limited leisure lifestyles and accepted that once becoming a mother themselves they too

would abandon their leisure interests to facilitate the leisure interests of their families. Indeed,

many mothers encouraged their daughters to actively engage in leisure pursuits, but failed to

demonstrate this concept due to their own individual leisure lifestyles (Shannon & Shaw, 2008).

Family Leisure

Parents described family leisure as an opportunity to escape the normal routine,

strengthen family bonds, an opportunity for skill development, to reduce stress, to recuperate,

positive influences on mental and physical health, creations of lifelong memories, and enhanced

overall quality of life (Mactavish, MacKay, Iwasaki, & Betteridge, 2007; Mactavish & Schlein,

1998; Mactavish & Schleien, 2004; Shannon & Shaw, 2008; Trenberth, 2005; Trussell & Shaw,

2007). Parents enjoyed providing their children with opportunities to partake in various leisure

opportunities, but most family leisure pursuits are designed to benefit the children; not the

parents (Emira & Thompson, 2011; Mactavish & Schleien, 2004; Shannon & Shaw, 2008).

Mactavish and Schleien (2004) found that families had trouble organizing everyone’s

individual schedules in order to plan family leisure activities. Parents have also voiced their

concern about finding leisure activities that were accessible to all family members and met

everyone’s interests and needs (Mactavish & Schleien, 1998; Mactavish & Schleien, 2004,

Trussell & Shaw, 2007).

Family Leisure and the Needs of a Child Diagnosed with an Intellectual Disability

Planning family leisure is often a tedious task for parents and particularly for mothers

who maintain the bulk of emotional and physical work (Mactavish & Schleien, 1998; Mactavish

& Schleien, 2004Trussell & Shaw, 2007). This may be particularly heightened for parents of a

Chapter 2: Literature Review

child with an intellectual disability as they must endure experience additional pre-planning and

organization (Emira & Thompson, 2011; Mactavish, MacKay, Iwasaki, & Betteridge, 2007;

Mactavish & Schleien, 1998; Mactavish & Schleien, 2004). Moreover they may experience

additional barriers in accessing leisure opportunities for their families (Emira & Thompson,

2011). Barriers such as: finding trustworthy knowledgeable staff, additional pre-planning,

locating credible programs, accessing adequate leisure programming, facilities that offer

adaptable equipment, accessible facilities, accessing funding to support their child’s assistive

equipment, social acceptance, and their own child’s unpredictability as a result of their

intellectual disability (Arnold, Heller, & Kramer, 2012; Emira & Thompson, 2011; Mactavish &

Schleien, 1998; Mactavish & Schleien, 2004, Moyson & Roeyers, 2012; Nankervis, Rosewarne,

& Vassos, 2011).

Mactavish, MacKay, Iwasaki, and Betteridge (2007) found that despite barriers

associated with planning family leisure that incorporates a child with a disability, parents view

family leisure pursuits to be beneficial for the family as a whole. Benefits associated with

engaging family leisure participation specifically for a child diagnosed with an intellectual

disability includes opportunities for family bonding, skill development, one on one assistance,

peer support, social engagement, feeling of social acceptance, increased overall health and well-

being family memories, and enhanced feelings of a good quality of life (Arnold, Heller, &

Kramer, 2012; Mactavish & Schleien, 1998; Mactavish & Schleien, 2004, Moyson & Roeyers,

2012; Nankervis, Rosewarne, & Vassos, 2011).

However, parents recognize that the additional needs of their child whom has an

intellectual disability complicates their ability to plan family leisure pursuits. Parents felt guilty

spending more one on one time with their child whom has an intellectual disability and recognize

Chapter 2: Literature Review

that their other, nondisabled, children may not be receive the attention they deserve (Mactavish

& Schleien, 1998). Mactavish and Schleien (2004) argued that parents felt their children without

a disability have more opportunities for social engagement and skill development within society

than their children diagnosed with an intellectual disability. Limited opportunities for

participation for their children with an intellectual disability left parents feeling obligated to

spend more time supporting their child’s individual needs (Mactavish, MacKay, Iwasaki, &

Betteridge, 2007). Mactavish and Shleien (2004) found that parents hoped providing one on one

support to their child diagnosed with an intellectual disability would help their child learn skills

that they could apply to other aspects of their lives. Thus providing their child with additional

support may impact the overall quality of their family’s leisure experiences by enhancing the

leisure experience of their child whom has an intellectual disability (Mactavish & Schleien,

1998; Mactavish & Schleien, 2004).

In summary, an intellectual disability is a result of a person’s IQ being lower than 70 and

their inability to perform adaptive behaviour tasks (Coon & Mitterer, 2010). People diagnosed

with an intellectual disability do not have a set amount of needs, but there are some general

needs that they require in addition to the needs that a person without a disability require (Bigby,

1997; Mactavish, MacKay, Iwasaki, & Betteridge, 2007). If a person has physical features that

assist a person in determining that they have an intellectual disability then that person’s

behaviour is more likely to be accepted by the public (Aksoy & Yildirim. 2008; Hames, 2005).

A person that has no visible physical features of their disability is more susceptible to public

ridicule due to no physical indicators that they have an intellectual disability (Aksoy & Yildirim,

2008; Hames, 2005).

Chapter 2: Literature Review

Mothers of a person diagnosed with an intellectual disabilities may experience stress

trying to meet the needs of her child whom has intellectual disabilities as well as the needs of the

rest of their family. A source of stress for aging mothers is the future planning of her child

diagnosed with an intellectual disability (Heller, Calwell, & Factor, 2007). As the mother ages

she may acquire her on health problems which hinder the level of support and care she can offer

her child who has an intellectual disability (Heller, Calwell, & Factor, 2007). There are many

gratifications and stress associated with being a mother of a child with an intellectual disability

(Greenberg, Seltzer, & Greenley, 1993). External forms of respite and social support will

minimize a mother’s stress level, but adequate forms of these supports are not always accessible.

As a result mothers may turn to their own social networks to seek assistance in caring for her

child that is intellectually disabled (Nankervis, Rosewarne, &Vassos, 2011). One source she may

access within her own social network is that of one of her non-disabled children/child

(Greenberg, Seltzer, & Greenley, 1993; Heller, Caldwell, & Factor, 2007). However, there is a

limited amount of research identifying how siblings are incorporated in the future planning

process in regards to their sibling’s future care. Current research has stated that parents and

service providers have failed to incorporate siblings of a person with an intellectual disability in

the future planning process of their sibling; despite the fact that they represent a huge portion of

the person diagnosed with an intellectual disability’s social network (Arnorld, Heller, & Kramer,

2012; Bigby, 1997; Heller & Arnorld, 2010; Heller, Caldwell, & Factor, 2007; Mactavish &

Schleien, 1998; Nankervis, Rosewarne, & Vassos, 2011; Orsmond & Seltzer, 2000).

Women often feel constrained to their ethic of care and mothers often unintentionally

model gendered stereotypes to their daughters and teach them to reproduce patriarchal

determined gender roles (Henderson et al.,1996; Parry, 2007; Shannon & Shaw, 2008). As a

Chapter 2: Literature Review

result, daughters themselves model feminine gender roles which further constrict them to their

moral ethic of care (Shannon & Shaw, 2008). Females put the needs of others before their own

because they value the relationships they have with others and feel obligated to nourish those

relationships; especially within a family context (Coon & Mitterer, 2010; Parry, 2007).

Women do not feel entitled to their own leisure pursuits once they become mothers or

accept a role as care provider (Henderson et al., 1996; Parry, 2007). Young women that have a

sibling diagnosed with an intellectual disability may take on role as caregiver for their sibling to

help reduce their parents stress associated with their sibling’s behaviours and additional needs.

However, there is a limited amount of research that incorporates the sibling’s perspective of

having a sibling with an intellectual disability. Most of the existing research is from the parent’s

perspective and the parents speak on behalf of their non-disabled child (Hames, 2005).

However, some parents may be unaware of their children’s perspective of what it is like to have

a sibling with a disability as a result of children internalizing their own distress because their

parents are pre-occupied with meeting the needs of their child diagnosed with an intellectual

disability (Giallo et al., 2011). More research needs to be completed from the sibling’s

perspective of what impact having a sibling has on their lives to further understand how children

with a sibling with a disability lives are impacted as a result of having a sibling with a disability.

Giallo et al. (2012) determined that siblings want to be involved in the future planning of

their siblings care but are rarely given the opportunity. Service providers are provided to help

facilitate the needs of the child diagnosed with an intellectual disability, but few services are

offered to facilitate the needs of the siblings (Giallo et al, 2012; Heller & Arnorld, 2012). More

research needs to be conducted to learn how to better understand and support the needs of

individuals whom have a sibling diagnosed with an intellectual disability.

Chapter 2: Literature Review

There is a gap in the current research in regards to how having a sibling with an

intellectual disability impacts the lives of their non-disabled siblings. In particular, how leisure

may be affected. More research needs to be done to determine how young women lives are

impacted as a result of having a sibling with an intellectual disability. Females are more likely to

provide care for their siblings than males due to their moral ethic of care and learned gender

roles. Thus, young women’s perspective of how their leisure lives are impacted as a result of

having a sibling with a disability is a topic that needs more attention in the leisure field. This

study aims to acquire descriptive data from its research participants. To provide detailed insight

to the lack of understanding of the sibling’s perspective in existing research.