The Nature and Scope of Family

Research
Kathleen Knafl, PHD, FAAN
University of North Carolina at
Chapel Hill

THE UNIVERSITY of NORTH CAROLINA at CHAPEL HILL

UNIVERSITY of PENNSYLVANIA
 Overview of Presentation

§ Unique qualities of family research

§ Defining characteristics
§ Research questions addressed
§ Major approaches to family research
§ Proposal development
§ Special considerations for family
researchers
§ Examples from successful proposals
Key Resources for Family Nursing Research

https://internationalfamilynursing.org/
The Defining Focus of Family Research

“In most behavioral and social

science research, the focus is
on the individual. In family
research, however, our focus
is usually on a group – the
family – whose composition
and characteristics change
over time” (Greenstein, 2001,
Methods of Family Research.
Thousand Oaks, CA: Sage.
 Defining Characteristics of Family Research –
Defining Criteria (Feetham, 2018)
•Conceptualization of family – what is family
•Definition of family – who is family
•Advance knowledge of family functioning and structure
•The design, instruments, analysis, and interpretation have
consistent application and align with family constructs
•As nursing is a practice discipline, the research is relevant to
practice
•The research informs health and social policy
•Evidence in each study of where it fits in the program of
research [or scholarship] and how it addresses gaps in the
science
Advancing Knowledge of Families?
• Family system response to a health-related
challenge; correlates & predictors of response
• Family member response to a health-related
challenge; correlates & predictors of response
• Interplay of family system & family member
response with regard to some outcome of
interest
• Effectiveness of a Intervention to support
optimal family & family member outcomes
Studies of Family Systems vs.
Family Members
§ Family system studies address questions
about:
§ Family functioning
§ Family processes (e.g. decision making,
conflict resolution)
§ Family relationships
§ Family member studies address questions
about
§ Family roles (e.g., caregiver, parent)
§ Health & wellbeing of individual family
members
§ Both may be addressed in the same study
Studies of Family System - qualitative

Kelly, K., & Ganong, L. (2011) “Shifting family

boundaries” after the diagnosis of childhood cancer in
stepfamilies. Journal of Family Nursing, 17, 105-132

The intent of the study was “to describe the impact of the
diagnosis on parental relationships in stepfamilies. …
Parental relationships changed, which shifted family
boundaries, creating instability in families who were trying
to cope with a very stressful life experience (p. 105)
 Studies of Family System- quantitative
Van, Riper, M., et al., (2018). Family management of childhood
chronic conditions. Does is make a difference if the child has an
intellectual disability. American Journal of Medical Genetics.
Part A., 176, 82-91.
Drawing on data from 571 parents of children with a chronic physical
condition and 539 parents of children with Down syndrome, we
compared the two groups across the six Family Management
Measure scales. We found significant differences in four of the six
FaMM scales, with parents of children with Down syndrome reporting a
significantly more positive view on the Condition Management Effort
and View of Condition Impact scales and a significantly less positive
view on the Child's Daily Life and Condition Management Ability scales
than parents of children with a chronic physical condition.

9
 Studies of Family Members’
Experiences
Cox, A., et al. (2003). Coping responses to daily life
stressors of children who have a sibling with a disability.
Journal of Family Nursing, 9, 397-413.

“This study attempted to answer the following question:

What are the coping responses to daily life stressors of
children who have a sibling with a disability? In this
study, 46 siblings of children with disabilities responded
verbally to a sentence-completion activity regarding
coping responses to stressful situations of everyday
life.” (p.397)
 Studies of Family Members –
Correlates & Predictors
Szyndler, J., et al. (2005). Psychological and
family functioning and quality of life in adolescents
with cystic fibrosis. Journal of Cystic Fibrosis, 4, 135-
144.

“The study aim was to look at the interrelationship of

quality of life, family functioning, individual
psychopathology and parental optimism to develop a
clearer picture of which factors may combine to produce
positive psychological well-being and quality of life in
adolescents with cystic fibrosis” (p.136).
 Health-Related Family Intervention
Studies (Chesla, 2010; Martire, et.al., 2004)
“Non-medical interventions that are psychologically, socially or
behaviorally oriented and that involve members of the patient’s
family or both the patient and family member” (Martire, et al., 2004)
Psychoeducational: Interventions that educate patients and family members about
disease processes, requirements for care; largely directed toward increasing
knowledge and skill in disease management, improving coping, and providing
or helping recipients expand social support

Relationship-focused: Interventions that focus on improving family relations

while living with the demands of chronic illness management; involve didactic and
skill building elements in problem-solving, family communication, conflict
management, or cognitive restructuring

Family Therapy: Interventions usually conducted by a family therapist using a family

systems model. Usually, the focus is on resolving dysfunction within the family,
rather than on the illness. There is little or no education about the illness.
 Family Intervention Studies
Swallow, V., et al. (2012). The online
parent information and support project, meeting
parents' information and support needs for home-
based management of childhood chronic kidney
disease: Research protocol. Journal of Advanced
Nursing, 68, 2095-2102.

This article is a report of a protocol for studying the

development and evaluation of an online parent information and
support package for home-based care of children with chronic
kidney disease stages 3–5. Eighty parents of children with
chronic kidney disease will be randomized. Primary outcomes
will assess parents’ self-efficacy and views of resources, using
standardized measures at entry and 24 weeks, and semi-
structured interviews at 24 weeks” (p. 2095).
 Major Research Design Approaches

Case approach – focus on

functioning of a bounded
system; particularistic
Variable approach – focus on
correlates and predictors of
family/family member
functioning; identification of
key elements
Pattern approach – focus on
family profiles and
functional wholes; combines
aspects of other
approaches
 Case Approach
“Case studies can provide us
with in-depth understanding of
a single demarcated entity.
Cases can be corporations and
clinics, but are usually people.
The aim of a case study is to
understand with minimum
intervention the particularity of
a case in its ordinary situation
from multiple perspectives”.

Abma, T., & Stake, R. (2014). Science of

the particular: An advocacy of naturalistic
case study in health research. Qualitative
Health Research, 24, 1150-1161.
 Case Approach
“We used a case study design,
with thematic narrative analysis
applied to interview data, to
describe the experiences of a
wife and son caring for a man
with semantic dementia. Using
this approach, we identified
four themes: (a) living with
routines, (b) policing and
protecting, (c) making
connections, and (d) being
adaptive and flexible”. Kindell, J., et al. (2014) Living with
dementia: A case study of one
family’s experience. Qualitative
Health Research, 24, 401-411.
 Contributions of the Case Approach

§ Describes family life in a

specific time & situation
§ Incorporates multiple
perspectives & data
sources
§ Reveals a contextually
grounded description;
provides explanatory
insights
§ Examines a particular
instance, but can
illuminate a general
problem
 Variable Approach
“The implicit variable-
centered argument is
that any object can be
best understood by
reducing it to its primary
elements & analyzing
each element in isolation
.. Thus, a system such
as a family can be
reduced to levels of
warmth, religiosity,
control, etc.” (Mandara,
2003).
 Variable Approach to Family Research –
Quantitative Example

“This paper aims to examine

the associations among
family conflict, parental
monitoring, diabetes self-care
and glycemic control. More
family conflict and less
parental monitoring were
hypothesized to be correlated
and to each have a direct Hilliard, M., et al. (2013).
Disentangling the roles of
association with glycemic parental monitoring and family
control. Poorer self-care was conflicts in adolescents’
hypothesized to mediate management of type 1 diabetes.
these associations” (p.389). Health Psychology, 32, 388-396.
 Variable Approach to Family
Research – Qualitative Example
“Parental experience of
living with an adolescent
with CF was marked by four
themes: (a) dynamic
normalization; (b) parents
confronted with adolescent’s
urgent desire to live; (c) parents Dupuis, F., et al (2011).
Transitioning care of an adolescent
experienced ongoing suffering; with cystic fibrosis: Development of
and (d) suffering unrevealed to Systemic Hypothesis between
Parents, Adolescent, & Health
HCP. Care Professionals, Journal of
Family Nursing, 17, 291-311)
 Quotes Illustrating Themes
A dynamic of normalization
“She wanted to do what her brother was doing when
he went away to summer camp when he was seven and
she was five. “I want to go to summer camp, too.” So I
made the effort to find a camp that would take a five-year
old girl who needed clapping”.

Ongoing suffering
“Even today, I . . . can’t talk to people about her
disease (with a tearful voice). because I always get
a little lump in my throat. So I don’t talk about it.
Obviously, some of the people around me know.
There are people I can talk to about it. But with new
people, I can’t because still 18 years later . . . it’s
hard. It is”.
Contributions of Variable Approach
§ Documentation of the
importance of family
variables/themes
§ Identification of
common risk and
protective factors
§ Identification of
mediators of family &
family member
response
§ Theory development
 Pattern (typological) Approach
Combining aspects of
case & variable-centered
approaches, “the main
advantage of the
typological approach is
the ability to identify,
organize & systematically
describe naturally
occurring behavior
patterns in people in such
a way that the wholeness
of the people is retained.”
(Mandara, 2003)
 Pattern Approach to Family
Research – Quantitative Example
Knafl, et al. (2013). Patterns of family management of childhood
chronic conditions and their relationship to child and family
functioning. Journal of Pediatric Nursing, 28(6), 523-535.

“In this paper, we report the results of a cluster analysis based on

the six scales comprising the Family Management Measure (FaMM)
and the resulting typology of family management. The sample of
575 parents (414 families) of children with diverse chronic
conditions fell into four patterns of response (Family Focused,
Somewhat Family Focused, Somewhat Condition Focused,
Condition Focused) that differed in the extent family life was
focused on usual family routines or the demands of condition
management. Patterns of family management were related
significantly to family and child functioning” (p. 523)
 Pattern Approach to Family Research –
Qualitative Example
Larsen, et al. (2011). An analysis of parental roles during
haematopoietic stem cell transplantation of their offspring: A
qualitative and participant observational study. Journal of Advanced
Nursing, 67, 1458–1467.

The aim of this study was to investigate the parents’

experiences and reflections on their parental role
while taking care of their child. Three ideal types of
approaches were identified (1) expertise-
mindedness, (2) dialogue-mindedness and (3) the
approach of the socially challenged parents. The three
types give a new perspective on the complex
interactions that occur between parents, child and staff
during treatment with haematopoetic stem cell
transplantation.
 Contributions of the
Pattern Approach
§ Provide a picture of
the whole
§ Derived patterns can
be linked to health
outcomes (variable
approach)
§ Sets the stage for
developing
customized
interventions
Advancing Knowledge – Key questions
when developing a proposal
§ Why is a family perspective needed in my study?
(justification)
§ What do I want to learn about families? (aims)
§ What are the underpinnings of my study? (conceptual
framework)
§ What is my approach to studying families? (design)
§ How am I defining family? (sample)
§ What data will I collect about the family? Whose
perspective will be represented? (measures)
§ How can I maintain my family perspective? (analysis)
 Example Studies

§ Parents Interpretation and Use of Genetic

Information. (Funded by National Institute of
Human Genome Research, R01 HG02036,
7/1/01-6/30/07; awarded to A. Gallo)
§ Mothers as Caregivers for Survivors of
Pediatric Brain Tumors. (Funded by the
National Institute for Nursing Research, R01
NR009651, 7/17/07-5/31/11; awarded to J.
Deatrick)
 Parents Interpretation & Use of
Genetic Information
§ Purpose: Identify information management
patterns used by families in which there is a child
with a genetic condition.
§ Family Focus: Family system esponse
§ Conceptual Underpinnings: Family Management
Style Framework
§ Approach:
§ Design: Mixed methods; predominantly
qualitative
§ Sample: 142 parents from 86 families
§ Data: Individual interviews; structured measures
§ Analysis: Family unit of analysis
 Mothers as Caregivers for Survivors
of Pediatric Brain Tumors
§ Aims: Examine contribution of caregiver
functioning/demands & household functioning to caregiver
competence.
§ Family Focus: Contribution of family variables to family
member outcomes
§ Conceptual Underpinnings: Heuristic model –
Competence of Caregivers of Brain Tumor Survivors
§ Approach:
§ Design: Mixed method; predominantly quantitative
§ Sample: 196 caregivers & their survivors
§ Data: Structured measures; individual interviews
§ Analysis: Individual family member
 Why is a family perspective needed
in my study?
§ Study justification
§ Importance of topic
& the contribution
of study to
knowledge
§ Value-added of
family perspective
§ Expected outcome
§ Avoid focusing on
methods at this
point
 Making the Case for Significance -
Introduction (Gallo)
The acquisition of new genetic knowledge has created
new dilemmas for how families make choices about
managing information about their child’s genetic
condition. Genetic conditions account for the primary
diagnosis of 11-16% of children admitted to the
pediatric units of teaching hospitals (citations). To meet
family’s informational needs and work effectively
with them to interpret and use information, it is
necessary to understand their views and behaviors
related to information management.
The results of this study will contribute to the
development of interventions for supporting the
families’ information management efforts and provide
the theoretical basis for understanding family
response to a child’s genetic condition.
Making the Case for Significance –
Statement of Aims (Gallo)
1) Identify family information management styles
by:
§ Describing parents’ knowledge, beliefs, &
behavioral strategies for accessing,
interpreting, conveying, & using genetic
information;
§ Describing the family & health care context in
which information management occurs.
2) Identify factors parents perceive as facilitating or
impeding their ability to access, interpret,
convey, & use information.
Making the Case for Significance –
Introduction (Deatrick)
Brain tumors are the most common solid tumors
of childhood. Improved five-year survival rates,
which have slowly improved to 65%. Mothers of
these survivors bear a disproportionate burden of
the caregiving in terms of living dramatically altered
lives after their child’s diagnosis and treatment and
into survivorship, as these survivors typically do not
become independent of their families of origin as
adults. The long-term goal of this program of
research is to develop and test theory based
interventions aimed at problem-solving issues
related to the many demands that they face as
caregivers, and enhance their household
functioning.
 Making the Case for Significance –
Statement of Aims (Deatrick)
§ To examine the relationship among caregiver
demands and caregiver, survivor, and household
functioning. (hypotheses also stated)

§ To examine the relationship between caregiver

competence and caregiver demands.

§ To identify the dimensions of perceived caregiver

competence that includes both quantitative
indicators and qualitative themes derived from
caregivers.
 Making the Case for Significance –
Background Literature

§ Acknowledge the
contribution of prior
research
§ Specify how building
on and extending
knowledge in field
§ Don’t overly restrict
scope of review
 Proposing a Credible Research Plan –
Clarify Conceptual Orientation

§ Family knowledge to be
generated (e.g.,
functioning, transitions,
roles, theory)
§ Conceptual building blocks
of knowledge to be
generated
Gallo – Family focus & conceptual
underpinnings
In recent years there has been a growing
interest in understanding family response
to illness and the interplay between family
unit and individual family member response.
The proposed study is based on a
conceptual framework that incorporates
the views of individual family members to
conceptualize overall family response to
a health related condition. The study is
grounded in the Family Management Style
Model Framework.
 Deatrick - Family focus &
conceptual underpinnings
§ In recent years there has been growing interest in in
young families who are providing care for their ill
and/or disabled child. Raina constructed and tested
a caregiving model predicting caregiver physical
and psychological health. This investigative team
constructed a heuristic model based on Raina’s
model (Perceived Competence for Caregivers of
Brain Tumor Survivors). The model proposes that
survivor, caregiver, and household functioning
influence perceived caregiver demands and that
caregiver demands predict perceived caregiver
competence.
 Credible Design – Research
Approach

§ Link the aims of the study

to your research approach
(e.g. grounded theory,
experimental, survey)
§ Cite appropriate methods
references
§ Select appropriate
mentors
 Gallo – Research approach
(pattern; mixed methods)
The aims of this study necessitate the use of
multiple data collection techniques. To achieve
Aims 1 and 2, the investigators need a detailed
understanding of how parents perceive needs,
issues, and strategies related to information
management. Data from qualitative interviews
will contribute to this end and provide the basis
for conceptualizing distinct patterns of family
information management. Data from quantitative
measures of life satisfaction, family functioning,
and the child’s functional status will provide a
broader family context for understanding
information management styles (Aim 3).
Deatrick – Research approach
(variable; mixed methods)
This explanatory, mixed methods design is
organized by a heuristic model to
sequentially collect quantitative data and
then to collect qualitative data. Three
primary aims will yield both descriptive
and hypothesis-testing data and one
secondary aim will yield descriptive
qualitative data.
 Credible Design – Strategic
Use of Examples
§ Use of “e.g.” to
clarify:
§ Family focus
§ Study design
§ Data collection
§ Analytic
approach
 Use of Examples (Data
Collection) – Deatrick
For example, in our interview guide, Caregiver
demands will be explored by asking questions
like, “Tell me a recent example of a particular
struggle you faced as your child’s caregiver”
Caregiver competence will be explored by
asking questions like, “How do the issues that
you described in your story affect how you feel
about yourself as a caregiver to your
son/daughter?”
Use of Examples (Analysis) – Gallo

The investigators will review the data on

a given code across families in order to
identify major themes in how the code is
reflected across subjects. For example,
a review of the “future expectations”
code might reveal three themes with
regard to how parents think the condition
will influence their child’s future: minimal
impact; compromised future likely;
medical breakthrough expected.
 Sample Design

§ Define family
§ Provide rationale
for including or
excluding family
members
§ Link sample design
& size to study
aims
§ Justify sample
design & size
 Conceptualizing and Defining Family
• Conceptualizing what is family - Underlying view
of the nature of families. For example …
• Biological – shared ancestry & genetic ties
• Structural – positions & roles such as parent, caregiver, and spouse
• Subjective – sense of commitment & attachment; individual
perceptions of who is family
• Defining who is family
•Target sample; what individuals “count” as family in the
proposed study?
•More specific than conceptualization
 Example - Gallo

Family” is defined as a system where there is a

commitment and attachment among the
members. Because of our focus on genetic
conditions, one parent must be the child’s
biological parent. Established families are
included because patterns of family information
management develop over time, and we are
focusing on patterns rather than on the process of
their development.
 Example - Gallo

§ The final sample will be comprised of 75 to

100 families. Following established
guidelines for qualitative research, sample
accrual will continue until no new information
is being generated. Our past research on
family management of childhood chronic
illness achieved informational redundancy
when 65 families had been studied. We
anticipate that a sample of 75-100 families
will be more than adequate to achieve our
goal of developing a range of family
information management styles”.
 Example - Deatrick

Caregivers of adolescents or young adults who

were diagnosed with brain tumors and meet the
following inclusion criteria will be recruited:
Survivor is (a) at least 5 years from diagnosis, (b)
at least 2 years from discontinuation of treatment,
and (c) between the ages of 14 and 30 years.
Mother is the defined the caregiver and (a)
resides in the same household as the survivor, (b)
views herself as assuming major responsibility for
the survivor’s care, and (c) legally related to them.
 Example – Deatrick

This is a population-based study in which every case

meeting the criteria of the study will be identified and
invited to participate in the study. A sample of at least 196
caregivers and their adolescent and young adult survivors
will be recruited into the study. Because a path analysis is
essentially a series of multiple regressions, a multiple
regression approach is used to determine appropriateness
of sample size. In order to account for the multiple factors
in the model, a conservative Type I error of .001 is chosen.

Goes on to provide evidence of a sufficient pool of

subjects.
 Credible Design – Procedure
§ Specify:
§ Instruments
§ Setting, timing
§ Data collector
§ If multiple family
members included,
specify:
§ Individual vs. conjoint
interviews
§ Adjustments for age
differences
§ Provision of demographic
data
What data should I collect about the
family? From whom? (measures)
§ Based on study aims & conceptual framework
§ Appropriate for design – qualitative/quantitative
§ Often includes family & non-family measures
§ May use different measures of the same
construct across family members
§ May combine multiple approaches
(e.g. observation, interviewing)
§ May be cross-sectional, longitudinal, or a
combination
 Resources for Family Selecting
Family Measures
https://internationalfamilynursing.org/resources-
for-family-nursing/research/
On reference list
Alderfer, et al. (2008). Evidence-based assessment
in pediatric psychology: Family measures. Journal of
Pediatric Psychology, 33, 1046-1061.
Ganong, L. (2003). Selecting family measurements.
Journal of Family Nursing, 9, 184-206.
Sawin, K. J. (2016). Measurement in family nursing.
Journal of Family Nursing, 22(3), 287–297.
 Gallo – Data Collection
The decision to interview parents individually
was made to promote maximum expression of
individual views and behaviors. By conducting
the interviews individually, the investigators aim
to overcome the problem noted in the literature
that when joint interviews are conducted, one
family member may dominate the interview and
family members’ responses may influence one
an other.
 Deatrick – Data Collection

Data for primary study aims will come from

telephone interviews with 196 caregivers
and approximately 196 survivors. After
carefully weighing the relative costs and
benefits of an in-person survey, we
decided that a telephone survey had definite
advantages in terms of sample recruitment,
data quality, and cost-effectiveness. During
our pilot study we found that telephone
interviews were well accepted by both the
caregivers and survivors.
 Credible Design - Quality Checks

§ Research team
§ Expertise of mentors
§ Appropriate
consultants
§ Audit trail – ongoing
decisions
 How can I maintain my family
perspective? (analysis)
See reference list for examples of dyadic and
family system analyses

§ Research question and unit of analysis

must be consistent
§ Question may address individual
perspective (e.g., perception of
caregiver role)
§ Question may address multiple
perspectives (e.g. caregiver & care
recipient – dyadic analysis)
Questions and Discussion