identifying indicators of well-being for caregivers of children with disabilities

Occup. Ther. Int. 17 (2010) 29–39 © 2009 John Wiley & Sons, Ltd. 29

RESEARCH ARTICLE

Identifying Indicators of Well-Being for Caregivers of Children with DisabilitiesElizabeth Larson*

Occupational Therapy Program, Department of Kinesiology, University of Wisconsin-Madison, Madison, WI 53706 USA

Abstract

This study identifi ed key indicators of well-being for caregivers of children with disabilities, Thirty-nine caregivers

completed life satisfaction and psychological well-being (WB) measures, and qualitative interviews. Data analysis

included descriptive statistics of WB measures and categorical analysis of qualitative data. Data triangulation was

achieved by importing theoretically derived codes for initial qualitative coding and quantitizing qualitative catego-

ries. Core indicators focused on positive family functioning and a reasonable family lifestyle, caregiver’s personal

growth and capacity to manage life demands, and the importance of daily balance. Study limitations included no

standardized assessments of the child with disabilities’ functioning, and the inclusion of caregivers with a range of

years of experience. Findings suggest therapists need to attend to how interventions foster or impede positive family

functioning and assist caregivers in balancing daily occupations to support capacity to caregiving. Future research

should examine how well-being varies over time as caregivers adapt from initial and later caregiving. Copyright ©

2009 John Wiley & Sons, Ltd.

Keywords

caregivers; paediatric occupational therapy; psychological well-being

*Correspondence

Elizabeth Larson, Occupational Therapy Program, Department of Kinesiology, University of Wisconsin-Madison, 2180 MSC, 1300

University Avenue, Madison, WI 53706 USA.

Email: [email protected]

Published online 17 August 2009 in Wiley InterScience (www.interscience.wiley.com) DOI: 10.1002/oti.284

they were coping well, they felt professionals cast them

as dysfunctional and failing to realize the full implica-

tions of their child’s condition (Ryan and Runswick-

Cole, 2008). Caregivers report that these diminishing

stereotypes are obstacles to securing needed services

(Wang et al., 2006). A better and participant-grounded

understanding of caregivers’ well-being could counter

this emphasis on the negative aspects of parents’ car-

egiving experience.

Current research has conceptualized well-being

broadly in caregiving families and operationalized it via

both negative and positive measures of parental depres-

sion and anxiety, health, stress or family functioning

Introduction

Recent research has examined positive functioning of

caregivers (Hoffman et al., 2006). This focus on family

strengths is important to counter existing negative

stereotypes which parents feel limit the extent and

quality of services delivered to them (Lindblad et al.,

2005; McLaughlin, 2006). These stereotypes include

viewing the caregivers’ efforts as futile, their lives with

sympathy or pity (Green, 2004; Landsman, 2003;

McKeever and Miller, 2004; McLaughlin, 2006), or

their optimistic stances as ‘delusional’ (Ryan and

Runswick-Cole, 2008). Even when parents believed that

Caregivers of Children with Disabilities Larson

30 Occup. Ther. Int. 17 (2010) 29–39 © 2009 John Wiley & Sons, Ltd.

(Wheeler et al., 2007; Mitchell and Hauser-Cram,

2008). Use of negative indicators could perpetuate the

stereotyping of parental experience. It may be useful to

employ the measures of the major well-being para-

digms which emphasize positive functioning. In the

subjective well-being (SWB) approach, well being is

indicated by ratings of one’s overall satisfaction with life

and material resources and how emotionally positive

one is of life (Diener et al., 2003) In the second approach,

psychological well-being (PWB), the multiple dimen-

sions rated include life purpose, quality in personal

relationships, sense of control over life circumstances,

personal growth, self-acceptance and autonomy (Ryff,

1989). This second approach endorses and has demon-

strated that thriving can occur despite adverse life con-

ditions such as low income or discrimination (Ryff

et al., 2003). Still, these approaches were developed with

typical populations and may or may not identify what

encompasses well-being in the unique life circum-

stances of parenting a child with a disability.

A more recent research approach has used mixed

methods to generate and identify comprehensive sets of

well-being indicators for a well middle age and car-

egiver population (Markus et al., 2004a; Wheeler et al.,

2008). Because many have noted the strong positive

skewing of well-being ratings towards the high end of

rating scales in Western cultures (e.g., most rating their

well-being as 7 or greater on a 10-point scale;

Freedman, 1978; Herzog et al., 1998; Cummins, 2001),

Markus’ and colleagues (2004a) established criteria for

core well-being indicators that included high ratings, in

the top quartile of the measurement scale, and broad

endorsement. Using these criteria, well-being indica-

tors for a midlife population included measures of life

purpose, life satisfaction, mastery, subjective physical

health, obligations to family and work, and reliability

of family support. Interestingly, a conceptual gap was

identifi ed via the accompanying qualitative study which

identifi ed positive relationships as the main source of

well-being (Markus et al., 2004b).

Wheeler and colleagues (2008) did a similar quanti-

tative–qualitative examination of a sister concept to

well-being, quality of life, in families caregiving for chil-

dren with Fragile X syndrome. Factors infl uencing

quality of life described by the caregiver in interviews

included being a mother (43%); having a supportive

husband, family or friends (23, 28 and 30% respec-

tively); physical and mental health (26%), work and

time for oneself (21% each), faith (19%); appreciation

of their child’s progress (9%), suffi cient fi nances (17%),

positive attitudes (13%), and negative social experience

related to their child (17%). In terms of priorities iden-

tifi ed through quantitative ratings, motherhood, goals

and values, and love were on average rated as most

important and satisfying contributors to quality of life.

This review suggests that the traditional well-being

measures may not fully capture what well-being means

or what encompasses for families parenting children

with disabilities. Only one PWB scale, positive rela-

tions, attends to the importance of relationships to

well-being. The qualitative studies suggest subjective

perceptions of health, balance of participation in work

and leisure, fi nancial resources, and support and life

circumstances may be important to an individual’s

summative assessment of their well-being. To address

the complexity of this phenomenon and understand the

perspectives of caregivers, a mixed-method approach

that triangulates among quantitative and qualitative

data was essential (Shepard et al., 2002).

This study identifi es indicators of well-being for car-

egivers of children with disabilities from subjective and

psychological approaches and participant-generated

perspectives, and raises the following questions: what

are the core indicators of well-being for caregivers of

children with disabilities? Do caregivers emphasize dif-

ferent indicators of well-being than other groups due

to their unique life circumstances?

Methods

Participants

Mixed-method sampling for this study included select-

ing a proportional ethnically diverse sample, a quanti-

tative strategy and selecting the extreme case of

caregivers with intensive demands, a theoretically

grounded qualitative one. Participants’ ethnicities were

distributed similarly to a national sample of caregivers

(CDC National Health Interview Survey [NHIS], 1999).

Self-identifi ed ethnicity included 65% Caucasian/white,

and 17.5% Mexican American/Hispanic groups, 15%

Native American (an overrepresentation >1% in the

NHIS) and 2.5% another or mixed ethnicity (Chinese

American, African American and Puerto Rican). Unfor-

tunately, recruitment of African Americans through

clinics serving them was not successful. This approach

was intended to garner representative but diverse voices

avoiding a representation of only the majority group

(Howe, 2004; Teddlie and Yu, 2007).


Larson Caregivers of Children with Disabilities

Forty-eight volunteers were recruited; 39 partici-

pants completed all measures. They lived in the

Midwest, West and West coast. They ranged in age

from 26 to 50 years of age (mean = 37 years) and family

incomes ranged from $9,600 to $200,000 (mean =

$53,307, standard deviation [SD] = $42,672). Mean

family size was four (range = 2–8). Primary caregivers

were typically female (95% mothers; 5% fathers),

married (79%) and well-educated (33% completed

some college, 23% completed a Bachelor of Science

degree, 23% completed advanced degrees, 20% com-

pleted high school/less than high school). Despite this

level of education, only 18% worked for pay full-time,

while 20% worked part-time, 8% were full- or part-

time students, and 51% managed childcare and house-

holds full time.

Caregivers were included if they parented a child

with features associated with greater caregiving

demands (signifi cant cognitive impairment Mercer and

Chavez, 1989; dependency in self-care or non-verbal,

Frey et al., 1989; behaviour challenges, Lecavalier et al.,

2006; Ratliffe et al., 2002; and/or high-risk health con-

dition, Patterson et al., 1992). Having a range of condi-

tions was not considered problematic as maternal stress

has been associated with the caregivers’ interpretation

of the child’s behaviours rather than the type of disabil-

ity (Wallander et al., 1989; Abbueduto et al., 2004;

Mitchell and Hauser-Cram, 2008).

Five families parented several children with diag-

nosed disabilities. The 43 children with disabilities

ranged in age from 1 to 20 years of age (mean = 7.4

years; 5.0 SD). The children’s disabilities or conditions

included autism spectrum disorders (28%), cerebral

palsy (14%), chronic medical or medically fragile con-

ditions (12%), signifi cant speech delays and/or dys-

praxia (19%), developmental delays (7%) and other

conditions such as foetal alcohol syndrome and

blindness, traumatic spinal cord injury, attachment

disorder, severe learning disability and sensory modu-

lation disorder, or severe attention defi cit disorder

(16%).

Measures

Interviews

Two-thirds of participants were interviewed by the

principal investigator; the project assistant who was an

anthropology graduate student trained in qualitative

methods conducted the remainder of the interviews.

Three participants had an interpreter. Participants were

interviewed in their homes, or in a few cases, by phone

or in community locations of their choosing. They were

asked about their well-being, daily lives, stressors and

experiences parenting a child with a disability. These

semi-structured interviews lasted between 2½ and 6

hours. The specifi c questions used for this analysis

included: how do you defi ne well-being? What are the

most important things in making a good life? What things

do you consider when thinking about your well-being?

Similar to Markus’ study (2004b), the term ‘a good life’

was used to probe important well-being dimensions.

SWB

Caregivers completed a SWB measure where they

rated a series of statements: how do you feel about your

life as a whole; . . . the income you and your family

have; . . . your standard of living – the things you have like

housing, car, furniture, recreation and the like; . . . the

extent to which you are achieving success and getting

ahead; . . . and your job on an affective Likert scale

anchored at either end with 1 = terrible and 7 = delighted

(Andrews and Withey, 1976; Juster et al., 1988). Spanish

translations of both well-being measures were provided

to Spanish-speaking participants. The texts was trans-

lated from English to Spanish by a graduate Spanish

student, back translated by a bilingual PhD prepared

educator and revised.

PWB

Caregivers completed 14-item self-report PWB scales

(internal alpha consistency coeffi cient = 0.83–0.91;

Ryff, 1989). The self-report version diminishes the

social desirability bias of responses (Springer and

Hauser, 2006). Items were rated on a six-point Likert

scale ranging from ‘strongly disagree’ to ‘strongly

agree’. The Autonomy scale assesses an individual’s self-

determination in guiding actions by one’s own stan-

dards and resistance to social pressures. Environmental

Mastery items assess sense of competence and mastery

to make use of opportunities and create circumstances

in line with personal values. Personal Growth focuses on

improvements in self and behaviour over time. Positive

Relations includes items about the positiveness, trust

and intimacy of relationships. Purpose in Life assesses

meaning and goal directedness. Lastly, Self-Acceptance

items assesses the participant’s positive view of them-

selves and their attributes.



Procedures

The study protocol and informed consent were approved

by the University of Wisconsin-Madison Institutional

Review Board. Qualitative data were generated through

verbatim transcriptions of completed interviews. To

assure accuracy of transcriptions, all transcripts were

reviewed with original tapes and revised for any discrep-

ancies. Spanish speakers’ interviews were transcribed in

both English and Spanish. The Spanish text was trans-

lated into English to assure accuracy of interview

interpretations. Interviews produced on average 90

single-spaced pages total per participant. The data used

for this analysis totalled 34 single-spaced pages.

Quantitative analysis

The analysis was a multi-step procedure to identify core

well-being indicators and their convergence via the three

different approaches. Participants’ ratings of quantita-

tive well-being measures were entered into an SPSS

database (SPSS V.15). Descriptive statistics of frequen-

cies, means and SDs on SWB items (overall life, income,

standard of living, extent getting ahead and job, and the

total of the fi rst three items) and PWB scales were gener-

ated (Table 1). Markus and colleagues’ criteria (2004a)

for core indicators were applied (>50% of caregivers

rating the item at 75% of the scales’ maximum).

Seventy-fi ve percent of the scales’ maximum ratings

were calculated for the life satisfaction or SWB and

PWB scales. The percentages of caregivers rating above

this threshold on items or scales were totalled.

Qualitative analysis

The qualitative analysis began with a close reading of

caregivers’ completed transcripts. This assured that

interpretations considered the participants’ overall

context. Relevant data segments were copied from tran-

scripts into Microsoft Excel spreadsheets. Systematic

coding, modifi cation of codes and sorting were accom-

plished using spreadsheet functions. Initial coding

included those suggested by SWB (e.g., mood, overall

life satisfaction, satisfaction with job, getting ahead),

PWB traditions (e.g., environmental mastery, positive

growth) and Markus’ work (relationships, suffi cient

income, self-development). The initial coding scheme

was generated from previously identifi ed well being

indicators. Each data segment was fi rst coded using this

scheme. New or qualitatively different categories were

generated through the next phase of open coding.

Codes were thematically grouped into categories and

subcategories. After fi ve revisions, the coding scheme

comprehensively captured all the indicators present in

all of the participants’ descriptions of well-being. Quali-

tative data were then quantifi ed by calculating the per-

centages of caregivers identifying each category and

subcategory. The fi nal categories and exemplars are

listed in Table 2. Following Markus and colleagues’

Table 1. Well-being scale means, standard deviations and percentages of caregivers endorsing top rating quartile

Measure: scale/item Item

(mean)

Standard

deviation

Percentage endorsing rating

in top quartile of scale

Core

indicator

PWB: Personal growth† 5.25 0.79 83.3 √PWB: Positive relations† 4.88 0.90 69.0 √PWB: Purpose in life† 4.78 0.78 69.0 √PWB: Autonomy† 4.70 0.94 59.5 √PWB: Self acceptance† 4.68 1.0 71.4 √PWB: Environmental mastery† 4.03 0.97 31.0

SWB: Feelings about life as a whole* 5.18 0.97 41.7

SWB: total (fi rst three items) 5.00 1.0 46.2

SWB: Feelings about standard of living* 5.00 1.3 37.6

SWB: Feelings about your job* 4.85 1.2 33.4

SWB: Feelings about family income* 4.82 1.3 37.5

SWB: Feelings about extent getting ahead* 4.68 1.3 33.3

†Psychological well-being (PWB) rating scale: 1 = strongly disagree; 2 = disagree somewhat; 3 = disagree slightly; 4 = agree slightly; 5 = agree

somewhat; 6 = strongly agree (75% of scale ≥4.5).

*Subjective well-being (SWB) rating scale: 1 = terrible; 2 = unhappy; 3 = mostly dissatisfi ed; 4 = mixed – equally satisfi ed/dissatisfi ed; 5 = mostly

satisfi ed; 6 = pleased; 7 = delighted (75% scale ≥5.25).

Core indicator: ≥50% of participants endorsing ratings in the top quartile of rating scale (75% or greater).



Table 2. Exemplars and percentages of caregivers describing categories and subcategories of well-being indicators in descending order

Categories and

subcategories

Representative verbatim exemplars % of Caregivers

Capacity to manage life

demands

Physical health

Responsivity

Mental health

• ‘I have to stay healthy because my husband has Parkinson’s disease so we never know what

the long term effect of that is going to be and like my kids would be devastated without

me. So like I fear like getting hit by a truck. That could probably be one of my bigger

worries. There’s cancer on one side of the family, there’s heart disease on the other – so

I’m doing my best’.

• ‘My mental health, physical health, spiritual life, how I react with people around me

especially my sons and my husband’.

• ‘How tired am I? How much physical pain am I in? Uhm because I have chronic pain. How

emotionally distressed am I? Or not distressed? How on top of things am I? Keeping things

fl owing and functioning. When and how connected am I with my husband and kids?’

• ‘mental, mental, mentally for me . . . mostly it’s just being at peace with my mind and

knowing that the decisions and the choices [I] make may be right or may be wrong but I

have to make them. Knowing that, trusting myself and believing in myself and whatever

happens after any choice that I made. I know I’m strong enough to deal with it’.

(autonomy)

85

59

59

23

Relationships

Family

Create positive

family

environment

Loving and caring

Spending time

together

• ‘Probably harmony in the house . . . everybody interacting real well, taking part’.

• ‘Comfort level in the manner of activity that’s going on. It’s not getting too out of

control . . . to the point to where they start fi ghting . . . They’re playing, they’re interacting,

they’re challenging each other but not you know going past that. (whispers) It’s just too

much sometimes’.

• ‘We love each other a lot, and we show it’.

• ‘I think to have a family that loves you is probably the most important thing’.

• ‘Having a wife that loves me and I love them and being able to be with them a lot – it

doesn’t get much better than that’.

79

46

23

15

Financial security/

suffi ciency

Not materialism

• ‘If you have enough money to do the things that you want to do, not only the everyday

things, but going above and beyond . . . family vacations, things like that, the weekends that

you want to do things’.

• ‘I think money always gets kinds of convoluted in there because I don’t need lots of money,

but having . . . fi nancial security of some kind. Um being able to pay the bills, have a little

left over. Get a pizza now and then’.

• ‘All the other stuff – the money and – that’s not really all that important to us as long as we

can pay our bills and still live an OK lifestyle . . . that’s fi ne’.

• ‘I don’t think money matters really. I mean you need it for basic stuff ’.

54

13

Balance/Order in daily

life

Opportunity for

recuperation

• ‘Having time for myself, having time for the family, having time for . . . I guess the key is

balance of everything’.

• ‘So my well-being is like you know everything’s slotted into place and I I’m very sort of

compartmentalized in my head like things have to be in place sort of thing. When things

get out of place then that knocks my well-being out. But if they’re all in place, my well-

being is great’.

• ‘My well being has got to include spiritual, physical and mental and emotional because if

those things aren’t in balance, you’re not going to have well being.

• ‘Enough sleep would enable me to then do the other things that I need to do. I’d take care

of my house. Take care of my children. Take care of my husband. Take care of

myself . . . Being able to feel that I’m doing the best within the capabilities I can’.

• ‘So it would be sleep, it would be exercise and diet I can, I don’t’ even care about being

skinny you know I just would like to feel healthy again and [do] some kind of exercise. Um

kind of you know it all comes down to time . . . It’s just I need a break that’s all, I need to

sleep’

49

43



Table 2. Continued

Categories and subcategories Representative verbatim exemplars % of Caregivers

Daily

demands/Press

• ‘I delight in being with him even though it probably doesn’t sound like it with everything

I’ve said . . . It’s just I need a break that’s all, I need to sleep . . . spiritually too. You just almost

don’t have time for that. The way I used to keep myself together would be . . . take a big long

walk you know to the beach kind of pray on the beach . . . come back and get your head

together, take a nap . . . and then you wake up and hey you’re ready you know for the next

thing . . . I don’t have that right now. So the techniques that I used to use to kind of cope

with life not too available’.

• That depends. Usually I start off most of the time thinking about my immediate situation

and whatever is going right or wrong at the moment . . . Um especially if things are going

wrong. If I’m late for appointments or [my child] has a fever’.

• My life is really kind of pressured, and there’s all kinds of things going on with, you know,

having to interpret for my [deaf] parents, whenever they’re around and always for [my

child]’

38

Family and child

progress

• ‘Feel like your family even as a whole is doing okay . . . I think if that’s together then

everything else kind of falls in line’

• ‘Having kids achieve what. . . . the best they can’.

38

Self development

Know and love self

Purpose and

fulfi lment

Autonomy

New

learning/growth

• ‘I feel comfortable with who I am and where I am in life right now’

• ‘I guess doing things that matter. I guess being a mother matters, doing some things to help

the schools be better . . . Getting my opinions heard’.

• ‘Everybody has good days and bad days . . . there aren’t too many days that I think that I’m

doing the wrong thing or that I should go back to work so that I can change my life

style . . . so I must be . . . doing pretty good for the most part’.

• ‘I’m still kind of a believer in life long education be it formally or informally . . . That I can

kind of continue to grow myself ’.

• ‘No matter how old you are, you know, you can

go back and fi nish school. And that it IS important . . . to take the time to go back to school’

38

20

18

7.5

10

Happy/content • ‘How do I defi ne well-being? Being healthy and happy’. 36

Faith • ‘Living your life according to the teachings of the Torah. I would extend from them. Living

your life as a good person, living your life with honesty, integrity and treating people the

way you want to be treated’.

• ‘Spiritual path that helps me a lot’.

• ‘I guess the fi rst thing of my well being I think spiritually. Uhm. Health, my physical. My

marriage. My family atmosphere. And my world. You know my world. As long as my

world’s OK’

27

Job satisfaction • How well my job is going. 27

Maintain positive

outlook/keep

perspective

• ‘I think keeping things in perspective has got to be like of overwhelming importance . . . you

just have to know what’s worth worrying about and what isn’t . . . you also just have to

make up your mind that . . . this part of your life, this is what you’re doing’

23

Enjoyment • ‘Like if I get an opportunity to go riding I mean to go you know go horseback riding I’m

absolutely thrilled. Working in my fl owers is wonderful, great stress reliever you know.

Doing my scrap booking is heaven on earth’.

20

Peace and satisfaction • ‘Not even like happy but at peace or calm, not too stressed out . . . usually if I have some time

for myself then I can accomplish that too’.

• ‘Well-being for me is . . . I feel peaceful about everything . . . where I’m at in my life, like

towards my job and my earnings, etc. and how I feel about my son. You know, I wouldn’t

call it, I can call it acceptance or resignation. I prefer to think of it as acceptance’

20

Environmental mastery • ‘I would defi ne it as a sense of . . . being fairly successful with what I’m doing’ 15

Categories in bold were generated from caregivers’ data.



criteria (2004b), qualitative codes were identifi ed as

core indicators, if identifi ed by at least 10% of the

group.

Credibility

According to Brantlinger and colleagues (2005), high-

quality qualitative research should include appropriate

participant selection, an accurate method to record

data, a systematic coding method, accurate portrayal of

participant’s views in the analysis, substantial quota-

tions to support conclusions, and links to the current

body of research illustrating the support and contribu-

tions of the current study. To enhance credibility, both

types of data were collected from the same sample,

avoiding comparisons of different populations

(Onwuegbuzie and Johnson, 2006). This was a large

qualitative sample, double the recommended number

of participants for similar qualitative approaches, fos-

tering confi dence in interpretive consistency (Collins

et al., 2007). There also was in-depth contact with par-

ticipants which generated rich descriptions, deep

understandings and clarifi cation of the caregiver’s

views and beliefs. In addition, an auditable and accurate

data set was created via the audio-taping, verbatim

transcribing, translating and verifying of the interview

data, and detailed description of systematic coding pro-

cedures. Credibility may also be fostered by providing

exemplars research that consumers can examine for

themselves; these are provided in Table 2. Qualitative

data were quantitized, weighting these fi ndings in rela-

tion to one another and the quantitative fi ndings, offer-

ing conversion legitimization (Onwuegbuzie and

Johnson, 2006). To further support the veracity of fi nd-

ings, convergence of data sources is described (Johnson

et al., 2007). This study also employed triangulation in

analysis and interpretation (Denzin, 1978).

Findings and discussion

Quantitative fi ndings

Using the strict criteria of the majority rating the

dimension at 75% of the scales’ maximum, none of

the SWB measures were core indicators of well-

being (Markus et al., 2004a). Because these were single

items, a composite life satisfaction indicator was

created. Some caregivers did not rate the job or ‘getting

ahead’ item, thus only the fi rst three SWB items (satis-

faction with life as a whole, income and standard of

living) were averaged for each caregiver. This set of

SWB items also did not meet the criteria for a core

indicator (Table 1). Because of limited options for paid

employment and limited personal control, it appears

that material success and achievement were not highly

satisfying aspects of the caregivers’ lives.

Core indicators identifi ed from the PWB perspec-

tive, from the most strongly to least strongly endorsed,

included Personal Growth, Self-Acceptance, Positive

Relations with Others, Purpose in Life and Autonomy

scales. The high endorsement of most PWB scales

would suggest that caregiving promoted fl ourishing in

terms of growth as a person, personal relationships,

acceptance of self, self-directedness and life purpose.

The low scores on Environmental Mastery scale would

suggest that caregivers as a group did not feel in control

of their life circumstances. The only PWB core indica-

tor similar to that of Markus and colleagues’ study

(2004a) was Purpose in Life. By contrast, Positive Rela-

tions met criteria for a core indicator for caregivers, but

not for the midlife sample.

Qualitative fi ndings

The qualitative fi ndings identifi ed indicators that were

similar to the midlife sample and Fragile X caregivers.

The most frequently mentioned indicators of well-

being were in the categories of health and relationships

(Table 3). For caregivers, the health category, re-titled

‘capacity to manage life demands’, was the most promi-

nent indicator of well-being (85%). Positive family

relations were the second most frequently mentioned

indicator (79%). This capacity to manage life demands

included subcategories of physical health (59%), mental

health (23%) and an ability to constructively respond

to family needs (59%). Perhaps because of the more

intense demands of caregiving, physical and mental

health and responsivity emerged as important. This

capacity was linked to the second indicator in that it

was essential to keep family life ‘fl owing and function-

ing’ and support positive family relationships. The

emphasis on having a capacity to be positively respon-

sive and construct a functioning family life was impor-

tant for caregivers to feel they were succeeding in the

one role that had overtaken other life roles. This is

probably why, unlike Markus’ group where relation-

ships included a wide range of family and friends, car-

egivers’ descriptions sharply focused on nuclear family

relationships.



Perceived freedom from fi nancial worries was the

next most often mentioned indicator (54%). Finances

needed to be only suffi cient, having enough to either be

free from worry or to do a few special things as a family

such as eating out at McDonalds or going out to a

movie. Such occasional special family events were

important to foster positive bonds and emotional con-

nections. For many of these families, their fi nancial

mindset refl ected the constraints they faced due to

limited or single-earner incomes.

Unique to this group were a set of indicators (see

bolded text) that described balance and order in daily

life (49%). It included subcategories of opportunities

for recuperation (43%) and the press of daily demands

(38%). Balance was described in many ways including

having balance among time for self and others, among

demands and opportunities for recuperation, among

priorities given to different family members’ needs

when organizing family activities or among aspects of

well-being. A lack of sleep, mental down time or physi-

cal breaks, or stress-relieving activities such as exercise

undermined well-being for caregivers. This group felt

their well-being would improve if only they could get

the desired recuperation and could therefore feel better

and be more responsive to their families. Though men-

tioned less often, balance was conceptually linked to the

capacity to manage life demands.

Another unique indicator was the family or child’s

progress; this was endorsed by 38% of caregivers as

important to their well-being. This indicator was also

noted by parents of children with fragile X (Wheeler

et al., 2008). This was a consideration as to how the

family or the child was doing in relation to their poten-

tial. This sense of forward progress on a trajectory was

especially gratifying for caregivers whose children had

signifi cant past challenges and were now doing better

in relation to that time. Again, this indicator is linked

to how well the caregiver is able to keep the family

functioning in order for there to be forward progress.

A minority of the caregiving group also endorsed

self-development as a core indicator. Although around

the same percentages in both the caregiving and midlife

groups endorsed self-development, far fewer caregivers

described instances of purpose and fulfi lment (18%

caregivers vs 45% of midlife sample) as important to

well-being. Knowing and loving oneself was also

endorsed by a lesser percentage of caregivers than mid-

dle-aged individuals (18% caregivers vs 45% midlife).

It appeared that for most caregivers, self-development

efforts focus on growing as a person, i.e., developing

more human-centred goals and values, rather than on

developing individually gratifying pursuits.

Certain feelings, perspectives and attitudes were all

mentioned as important to caregivers’ well-being. Posi-

tive emotions mentioned included feeling happy or

content (36%) or enjoying life (20%). For some who

could not achieve contentedness, feeling peaceful about

their situation contributed to their well-being (20%).

Alternatively, achieving a positive outlook on life or

keeping perspective was an effortful but important

pursuit for caregivers (23%). It gave caregivers emo-

tional ‘distance’ from the daily demands so as not to be

overwhelmed. In a similar vein, having spiritual beliefs

that supported and gave perspective on daily efforts was

also important (27%). A small minority of caregivers

described having a sense of control, coded as environ-

mental mastery, as important to their well-being (15%).

Table 3. Comparison of percentages describing categories of well-being dimensions in care giving and midlife samples

Categories and subcategories % of

Caregivers

% of

Midlife

sample

Capacity to manage life demands 85

Physical health 59 67

Responsivity 59

Mental health 23

Relationships 70

Family 79 57

Create positive family environment 46

Loving and caring 23 37%

Spending time together 15 27%

Financial security/suffi ciency 54 49%

Not materialism 13 28%

Balance/ Order in daily life 49

Opportunity for recuperation 43

Daily demands/Press 38

Family and child progress 38

Self development 38 40%

Know and love self 20 52%

Purpose and fulfi lment 18 45%

Autonomy 7.5 42%

New learning/growth 10 18%

Happy/content 36

Faith 27 36%

Job satisfaction 27 40%

Maintain positive outlook/ keep perspective 23 30%

Enjoyment 20 49%

Peace and satisfaction 20 30%

Environmental mastery 15

Categories in bold were generated from caregivers’ data.



These attitudes and beliefs may be more important to

some caregivers than others in promoting well-being

depending upon their family’s current functioning and

child’s progress.

Conclusion

Caregivers’ well-being indicators varied from typical

populations in the kind and priority of indicators but

were similar to many described by caregivers of other

children with disabilities. Of the commonly used well-

being measures, only the PWB scales converged con-

ceptually with the caregivers’ participant-generated

indicators. Differences from typical populations in core

indicators included a greater emphasis on the impor-

tance of nuclear family relations and functioning, a

greater emphasis on the importance of subjective per-

ceptions of health as well as a broader conceptualization

of health (energy, responsivity, mental health), and an

emphasis on balance and order in daily life. It appears

that many caregivers chose to make the best of their life

circumstances, changed what they could, which was

often themselves, and chose to lead deeper, more con-

nected lives. These alterations of self and attitude

appeared to counter the low levels of control (environ-

mental mastery) they felt. No SWB indicator was identi-

fi ed as a core indicator. However, in the qualitative data,

fi nancial resources were important to well-being at a

minimal level of suffi ciency and as they served to

enhance the quality of family life. Because these caregiv-

ers took on caring as their major occupation, they were

less likely to do paid work and therefore were more

likely to have limited fi nancial means. They often chose

to be happy with ‘what is’ in their life circumstances

rather than pursuing happiness and material goods.

McLaughlin (2006) argued that caregivers embed

impairment into family life so that it is part of the

ordinary, rather than the tragic. ‘The day to day,

at times intensive, caring activities that are part of, and

at times structure, family living, take on an ‘ordinari-

ness’ that sits outside discourses of tragedy or heroism,

in order to value the child as a full and equal member

of the family’ (McLaughlin, 2006, 6). How caregivers

reconstructed ‘life as ordinary’ appears to reshape their

view of what constituted well-being.

Implications for occupational therapy

Occupational therapists, because of our humanistic

and occupation knowledge base, can assist families in

multiple ways to promote caregiver’s well-being, and

thereby foster their capacity to enhance their child’s

development and capacities. This study suggests it is

important therapists recognize that the caregivers’

primary priority is the family’s functioning, specifi cally

things that keep family life fl owing and positive. There-

fore, home-based interventions need to include activi-

ties that promote positive, affi rming interactions

between family members. Given that home-based

intervention and home programmes often deal with the

most problematic child behaviours, or critical skill defi -

cits also likely to elicit resistant behaviours from the

child due to the task diffi culty, this is no small task for

a therapist. However, if therapists can attend to both

strategies to address the child’s skill defi cits and the

family’s ideals for positive interactions, this may better

meet the family’s needs.

Therapist must also consider how the caregiver’s fre-

quent daily challenges to their capacity for responsive-

ness could be countered by changes in lifestyle that

allowed for rejuvenation. Collaborating with caregivers

to weave in better balance and order in daily life could

be accomplished using principles of lifestyle redesign

(Clark et al., 2001). Potential lifestyle changes could

include increased mindfulness during enjoyable activi-

ties, mini-respites in-between activities, conscious

restructuring of daily priorities to weed out low priority

activities that can be replaced with leisure breaks, or

diminishing demands by developing the child’s inde-

pendence in leisure for example. Clinics providing serv-

ices to children could promote respite by scheduling

therapy in suffi cient time blocks to allow parents to

leave for a mental or exercise break, or including

opportunities for respite in waiting rooms such as

work-out equipment, meditation rooms, knitting

groups or other leisure activities.

Lastly, returning to the parent’s concerns about neg-

ative stereotypes, it is important that professionals rec-

ognize the attitudes that colour our interactions with

parents. Challenging our own stereotypes is important

to diminishing the additional burdens parents experi-

ence acquiring, navigating and receiving services for

their child. It is important for caregivers to be able to

share both the diffi culties and successes of their lives

without feeling that their competence will be judged,

that they will be pitied or that their child will be viewed

negatively (Ryan and Runswick-Cole, 2008). To the

contrary, this research points to the growth-promoting

and life-deepening potential of caregiving for these



children although such benefi ts may be less valued in

Western society. One could argue that instead of dimin-

ishing well-being, although this was true for life satis-

faction, the caregiving experience fosters the core

virtues identifi ed by positive psychology (Daahlsgaard

et al., 2005). These include courage or emotional

strength in adversity; justice or advocacy for individuals

with disability; humanity or tending to the needs of

others; temperance or maintaining self-control in chal-

lenging circumstances; wisdom or keeping perspective

on life circumstances; and transcendence or a sense of

hope and spirituality.

Limitations and recommendations for future study

Participants in this study did not complete objective

measures of their child’s capacities or care needs, and

varied in their years of experience in caregiving. Find-

ings thus represent an ‘averaging’ across early to expe-

rienced caregivers. In future studies, it is important to

examine the longitudinal adaptation to caregiving

demands over time to ascertain what constitutes well-

being across a caregivers’ career. Such an approach

would likely lead to different interventions for different

stages of caregiving.

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