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The Family Stress and Coping Interview for families of individuals with
developmental disabilities: A lifespan perspective on family adjustment

Article in Journal of Intellectual Disability Research · May 2003

DOI: 10.1046/j.1365-2788.2003.00490.x · Source: PubMed

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 Journal of Intellectual Disability Research
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    ⁄ pp ‒ ⁄  

Blackwell Science, LtdOxford, UKJIDRJournal of Intellectual Disability Research-Blackwell Science Ltd, Original ArticleFamily Stress and Coping InterviewJ. S. Nachshen et al.

The Family Stress and Coping Interview for families of

individuals with developmental disabilities: a lifespan
perspective on family adjustment
J. S. Nachshen, L. Woodford & P. Minnes
Department of Psychology, Queen’s University, Kingston, Ontario, Canada

Abstract Introduction
Background The present study investigated the psy- Stress in families of children with developmental dis-
chometric properties of the Family Stress and Coping abilities (DDs) has been the focus of many studies
Interview (FSCI), a questionnaire designed to quan- (e.g. Minnes ; Frey et al. ; Dyson ;
titatively and qualitatively examine the experiences of Cummins ). One relatively neglected area con-
parents of children with developmental disabilities cerns stress over the lifespan in response to normative
(DDs). events, including typical developmental milestones
Methods The participants consisted of  primary and non-normative events which are unexpected
caregivers of  individuals with DDs from centres (Wikler et al. ; Wikler ).
in Eastern, Central and North-western Ontario, The Family Stress and Coping Interview (FSCI)
Canada. The participants completed a demographic was developed to address parents’ experiences related
questionnaire, the FSCI, and the Vineland Adaptive to events in the lives of their child with a develop-
Behaviour Scales. mental disability (for a description, see Minnes &
Results The results of this study indicate that the Nachshen ). The FSCI has a number of advan-
FSCI has adequate reliability (i.e. internal consis- tages for use in research and clinical practice: () in
tency and long-term stability) and validity (i.e. inde- response to the recommendation that participatory
pendent item ratings and discriminant validity). research methods should be used more frequently
Conclusions The results of this study support the use (Turnbull et al. ), the FSCI was developed in
of the FSCI as a measure of family stress in research collaboration with families; () the FSCI uses quali-
and practice. tative and quantitative research methods (Patterson
et al. ); () in response to a broader, lifespan
Keywords family adjustment, Family Stress and
perspective in family research (Blacher ; Seltzer
Coping Interview, lifespan perspective
et al. ), the FSCI addresses issues across the
lifespan; and () in response to the recommendation
Correspondence: Patricia Minnes, Department of Psychology,
that efforts be made not to ‘pathologize’ research
Queen’s University, Kingston, Ontario, Canada KL N participants (Patterson et al. ) and a gradual shift
(e-mail: minnesp@psyc.queensu.ca). in research emphasis to include coping and adapta-

©  Blackwell Publishing Ltd

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J. S. Nachshen et al. • Family Stress and Coping Interview

tion of families (Glidden ), the FSCI encourages Family Stress and Support Questionnaire, FSSQ) to
discussion of family successes. address the shortcomings of previous measures of
The purpose of the present paper is to provide data family experiences (for a complete description, see
on the psychometric properties of the quantitative Minnes & Nachshen ). In its initial version, the
portion of the measure. FSSQ consisted of  lifespan issues, and was later
revised to include five issues which were more rele-
vant to the families of older adults (Woodford &
Subjects and methods Minnes ). It was also decided that the measure
was more effective as an interview rather than a ques-
Participants tionnaire, and the emphasis was placed on the fam-
The participants consisted of  parents of  indi- ily’s experiences. Therefore, the name was changed
viduals with DDs from centres in Eastern, Central to the FSCI.
and North-western Ontario, Canada. The parents To begin, parents are asked to rate the level of
ranged in age from  to  years (mean = . stress of each issue on a five-point Likert scale
years, SD = . years). There were  female ranging from () ‘not stressful’ to () ‘extremely
and  male caregivers from  different families. stressful’. Individual items can be summed to
The majority (.%) of parents were married. create a total score (for a full list of issues, see
Level of education was distributed fairly evenly, with ‘Appendix ’). The present study analyses the quan-
.% having some post-secondary-school educa- titative information obtained in this rating scale. In
tion, .% having completed high school and .% addition to quantitative data from the rating scale,
having less than a high-school education. interview questions were asked to gather qualitative
The offspring with DDs ranged in age from  to information that was not analysed in the current
 years old (mean = . years, SD = . years). study. The interview provides rich qualitative infor-
There were  females and  males. Level of disabil- mation (for an example, see Nachshen & Jamieson
ity ranged from mild (.%) to moderate (.%) ). ‘Appendix ’ contains a list of these inter-
and severe (.%). Aetiologies included Down view questions.
syndrome and unknown cause (.%, each),
autism (.%), cerebral palsy (.%), problems at Maladaptive behaviour
birth (.%), and fragile X syndrome (.%). The The Vineland Adaptive Behaviour Scales – Maladap-
majority (.%) of the offspring with DDs lived with tive Behaviour Domain (VABS-MBD; Sparrow et al.
their parents. ) consists of  statements related to maladaptive
behaviour of the person with DDs (e.g. ‘Is overly
dependent’). Each item is rated: () ‘no, Never’; ()
Measures ‘sometimes or partially’; or () ‘yes, usually’. The
total score ranges from  to .
Demographic information

A family information checklist was used to obtain

demographic information regarding the parent’s Procedure
age, sex, education and marital status, and the The sample was obtained from parents’ support
child’s age, sex, type of disability and living groups, social service agencies and community
accommodations. groups who work with people with DDs in Eastern,
Central and North-western Ontario. The agencies
contacted potential participants by mail, and a fol-
Family stress
low-up phone call was then made to confirm interest
The FSCI (Nachshen & Minnes ; Woodford in participating. Individuals either contacted or were
) is a quantitative and qualitative measure of contacted by the researcher (depending on agency
stress and coping in families of individuals with DDs. protocol), who arranged an interview time. Before
The FSCI was developed in  (then called the the interview, an information sheet was given to the
©  Blackwell Publishing Ltd, Journal of Intellectual Disability Research , –
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J. S. Nachshen et al. • Family Stress and Coping Interview

participants and written consent to participate in the Discriminant validity

study was obtained. The interviews lasted between
The FSCI was created to address issues across the
. and  h.
entire lifespan of individuals with DDs. As such, it
was expected that there would be differences
between three age groups. The first group was
Results composed of –-year-olds (n = ). The age of 
years was chosen as a cut-off since it represents a
Reliability
transition between child and adult services in
Internal consistency Canada. The second group was composed of
younger adults between the ages of  and  years
The internal consistency of the FSCI, as assessed
(n = ). The third group consisted of older adults
using alpha coefficients (Cronbach ), was found
above the age of  years (n = ). It was found that
to be high (a = .).
issues tended to be most stressful for parents of
individuals at the relevant age. The results for the
Long-term stability
individual items are reported in Figure . Overall,
The long-term stability of the FSCI was examined parents of younger children (mean = .,
for  participants ( mothers and nine fathers) who SD = .) reported more stress on the FSCI than
were administered the interview twice with an inter- parents of younger adults (mean = .,
val of approximately one year. These participants SD = .) or older adults (mean = .,
were older (mean =  years, SD = . years) and SD = .) (F = ., P < .).
the majority were married (.%). It was found that Eighty older parents also completed the VABS-
the pair-wise correlation between the full-scale scores MBD (Sparrow et al. ). The FSCI was found to
was adequate (r = ., P < .), indicating that discriminate between individuals with different levels
full scale scores on the FSCI are relatively stable over of maladaptive behaviour (F = ., P < .). The
the long-term. Changes tended to involve an increase parents of individuals with high levels of maladap-
over time. tive behaviour (n = ; mean = ., SD = .)
were found to experience significantly more stress
than parents of individuals with medium (n = ;
mean = ., SD = .) (P < .) and low levels
Validity
(n = ; mean = .) (P < .).
Independent item ratings

The face validity of the FSCI items was assessed

using independent item ratings by  professionals
Discussion
and graduate students who were attending an annual
research day organized by the Research Special Inter- The results of the present study indicate that the
est Group of the Ontario Association on Develop- stress rating scale on the FSCI is a reliable and valid
mental Disabilities. The sample included graduate measure for use with parents of individuals with DDs.
students (%), psychologists (%), social workers The scale has a high level of internal consistency and,
(%) and others, with a mean of . years of expe- at least for parents of older adults, relatively high
rience (SD = .) in the field of DDs. They were long-term stability. Further research is needed to
given forms asking them to rate the relevance of each examine changes in the FSCI over longer time peri-
issue to the experience of the parents of children with ods with multiple age groups.
DDs on a scale from () ‘not relevant’ to () The face validity of the FSCI was high. Another
‘extremely relevant’. The mean rating for the rele- important finding is that the total score on the inter-
vance of the scale overall to the experiences of parents view is useful in discriminating between parents of
of children with DDs was . (SD = .), indicat- individuals at different age groups and parents of
ing that these knowledgeable individuals found the individuals with different levels of maladaptive behav-
overall scale to have face validity. iour. In this study, the parents of individuals under

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J. S. Nachshen et al. • Family Stress and Coping Interview

Family Stress and Coping Inventory

Diagnosis
Explain to Others
Cause of Disability
People Day to Day
Health Professionals
Legal Professionals
Education
Creating Opportunities
Integration
Liveat Homeor Elsewhere
Needs of Other Offspring
Personal Needs
Needs of Spouse
Friendships for Parent
Offspring’s Sexuality
Work Placements

Longterm Accommodation
Wills and Trusts
Emotional/Social Support
Transportation
Day to Day Assistance
Time Apart

Financial Issues

0 1 2 3 4 Figure 1 Parent’s mean stress rating (± SD) for

each issue on the Family Stress and Coping
Mean Stress Inventory.

the age of  years experienced more stress than par- methodology, and respecting the expertise of care-
ents of either younger or older adults. Consistent with givers and avoiding an assumption of maladjustment
previous research, the parents of individuals with are invited to consider using the FSCI as a measure
more severe maladaptive behaviour were found to of stress and coping in parents of individuals with
experience more stress than parents of individuals DDs.
with mild or moderate maladaptive behaviour
(Friedrich et al. ). Research is currently under-
way to examine the ability of the FSCI to discrimi- Acknowledgements
nate among parents of individuals with different types
of DDs. This project was funded in part by grants from the
Overall, these results provide preliminary support Advisory Research Committee, Queen’s University,
for the reliability and validity of the stress rating Kingston, Ontario, Canada, and the Scottish Rite
scale portion of the FSCI. Although research with Foundation, Toronto, Ontario, Canada. The first
different populations and longer time periods would author (J.S.N.) would like to thank Dr John Jamieson
add to our knowledge of the psychometric proper- at Lakehead University, Thunder Bay, Ontario, for
ties of the FSCI, the present study demonstrates the his support and assistance. The authors wish to
instrument’s promise for use in research and prac- acknowledge the support of several agencies which
tice. Researchers and clinicians who are interested helped with the recruitment and selection of inter-
in using a measure developed in a participatory viewers. These include: the Kingston and District
approach, incorporating qualitative and quantitative Association for Community Living; the Lanark

©  Blackwell Publishing Ltd, Journal of Intellectual Disability Research , –
 Journal of Intellectual Disability Research     ⁄ ⁄  
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J. S. Nachshen et al. • Family Stress and Coping Interview

County Service Providers, Ongwanada, Kingston; disabilities. Developmental Disabilities Bulletin ,
Catulpa Tamarac Child and Family Services, Orillia; –.
Pathways to Independence in Belleville; the Trenton Patterson J. M., Behr S. K. & Blue-Banning M. J. ()
Putting participatory research into action. In: Cognitive
Association for Community Living; the Prince
Coping, Families and Disability (eds A. P. Turnbull, J. M.
Edward Association for Community Living; and the Patterson, S. K. Behr, D. L. Murphy, J. G. Marquis &
Campbellford and District Association for Commu- M. J. Blue-Banning), pp. –. Paul H. Brookes,
nity Living. We also greatly appreciate the contribu- Baltimore, MD.
tions of our interviewers, Mary Lou Boudreau, Seltzer M. M., Greenberg J. S., Floyd F. J., Pettee Y. &
Shelby Lawrence, Lynne Lloyd and Marjory Phillips. Hong J. () Life course impacts of parenting a child
Finally, but most importantly, we wish to extend with a disability. American Journal on Mental Retardation
, –.
particular thanks to the many parents in South-
Sparrow S. S., Balla D. A. & Cicchetti D. V. () Vine-
eastern, Central and North-western Ontario who
land Adaptive Behaviour Scales: Interview Edition Expanded
took the time to talk with us. Form Manual. American Guidance Services, Circle Pines,
MN.
Turnbull A. P., Patterson J. M., Behr S. K., Murphy D. L.,
References Marquis J. G. & Blue-Banning M. J. (eds) () Cogni-
tive Coping, Families and Disability. Paul H. Brookes,
Blacher J. () Transition to adulthood: mental retarda- Baltimore, MD.
tion, families and culture. American Journal on Mental Wikler L. () Periodic stresses in families of mentally
Retardation , –. retarded children: an exploratory study. American Journal
Cronbach L. J. () Coefficient alpha and the internal of Mental Deficiency , –.
structure of tests. Psychometrika , –. Wikler L. M., Wasow M. & Hatfield E. () Chronic
Cummins R. () The subjective well-being of people sorrow revisited: parents vs. professional depiction of the
caring for a family member with a severe disability at adjustment of parents of mentally retarded children.
home: a review. Journal of Intellectual and Developmental American Journal of Orthopsychiatry , –.
Disability , –. Woodford L. () Well-being in parents of adults with
Dyson L. () Response to the presence of a child with developmental disabilities. MSc Thesis, Queen’s Univer-
disabilities. Parental stress and family functioning over sity, Kingston, Ontario.
time. American Journal on Mental Retardation
, –. Accepted  February 
Friedrich W. N., Wilturner L. T. & Cohen D. S. ()
Coping resources and parenting mentally retarded chil-
dren. American Journal of Mental Deficiency , –.
Frey K. S., Greenberg M. T. & Fewell R. R. () Stress Appendix 1
and coping among parents of handicapped children: a
multidimensional approach. American Journal on Mental Issues on the Family Stress and Coping Interview
Retardation , –.
 The diagnosis of _______ as having a develop-
Glidden L. M. () What we do not know about families
mental disability.
of children who have developmental disabilities. Ques-
tionnaire on Resources and Stress as a case study. Amer-  Explaining to others about _______’s develop-
ican Journal of Mental Retardation , –. mental disability.
Minnes P. M. () Family stress associated with a devel-  Your feelings about the cause of _______’s
opmentally handicapped child. International Review of developmental disability.
Research in Mental Retardation , –.  Dealing with friends/family/people in the neigh-
Minnes P. & Nachshen J. S. () The Family Stress and bourhood on a day-to-day basis.
Support Questionnaire: a focus on the needs of parents.  Dealing with doctors and other allied health
Journal on Developmental Disabilities , –.
professionals.
Nachshen J. S. () Parental stress in families of children
 Dealing with legal professionals.
with developmental disabilities: a pilot study using the
family stress and support questionnaire. MSc Thesis,  Dealing with _______’s teachers and the educa-
Queen’s University, Kingston, Ontario. tional system.
Nachshen J. S. & Jamieson J. () Advocacy, stress, and  Creating and/or finding opportunities for _______
quality of life in parents of children with developmental to make friends and participate in activities.
©  Blackwell Publishing Ltd, Journal of Intellectual Disability Research , –
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J. S. Nachshen et al. • Family Stress and Coping Interview

 Deciding on the best level of integration for Appendix 2

_______.
Qualitative questions on the Family Stress and
 Making the decision concerning accommodation
Coping Interview
in the home or in the community.
 Meeting the needs of your (other) children. a What challenges have you faced in this particular
 Meeting your own personal needs. issue?
 Meeting the needs of your spouse. b What successes have you had and how did you
 Maintaining satisfying friendships for yourself. achieve them?
 Dealing with _______’s sexuality. c How have you tried to cope with this challenge?
 Work placements or employment for _______. Why did you choose this strategy? Has this been
 Long-term planning for accommodation for helpful?
_______. d Has the stress related to this issues changed:
 Planning for wills, trusts and guardianships. i over the past Increase No change Decrease
 Planning for emotional and social support  years?
for. ii in the last year? Increase No change Decrease
 Transportation. If changes in stress have occurred, why?
 Day-to-day assistance with care of _______. e What would you like to see change that would help
 Time apart from _______. make this experience easier for you and for parents
 Dealing with financial and insurance issues. of other children with special needs?

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