Children with special needs: Unpacking how mothers and fathers construct their roles to care for a child with a chronic health condition Ted McNeill Ph.D., RSW., John Beaton Ph.D., Gert Montgomery MSW, RSW., David Nicholas Ph.D., RSW. Father Involvement Research 2008 Toronto, CANADA

Addressing gaps in knowledge… We lack a detailed understanding of the gestalt of couples’ experiences We talk about family systems theory but our knowledge is more about individuals [e.g., patient, mother, sibling(s), father] We need to move from “silhouette” of partner to explicit understanding of fit with the partner

For example  If caring for a child with a chronic health condition is a catalyst for more meaningful involvement for fathers, then what does that look like in the context of the parenting relationship?  For mothers who feel burdened due to providing the majority of the child’s care, what is the relationship like with the father?  For mothers whose identity is closely linked to her role as a caregiver, how much of a role is available for fathers? These questions suggest that a relational focus would be a useful lens to help understand the individual roles and experiences of mothers and fathers.

Methodology  Grounded theory study  Goal is an explanation of parents’ experiences, roles, identities, etc.  Theoretical sampling strategy  parents of children with spina bifida, cerebral palsy, juvenile rheumatoid arthritis and a few other chronic conditions  20 couple interviews  10 individual interviews (5 couples)

Description of sample  Diverse sample:  45% identified with a particular ethno racial community (i.e., non dominant culture)  Average age mid 40’s  Education ranged from elementary school to professional degrees  Family income ranged from $100K; Average income $62K  75% had 2 children; 20% had 3; 5% had 4

Results: Shared experiences  Life is a real struggle for many of the families in this study  Worries for their child (day to day care, stigma, child’s future)  Feeling different from other families and striving for “normality”  Managing child’s care and looking after other children  Financial strains  Balancing work inside and outside the home  Less individual and couple time

Parenting configurations  In most families (15/20), the mother was more involved inside the home and the father worked more hours outside the home

Results  Key concepts for understanding the parenting roles:  Complementarity (i.e., specialization)  Symmetry (both have required skills)  Key domains: caregiving, household management, and breadwinning

Complementarity “Usually there has to be one who is strong. I mean like tough and strong and one who gives love. It can’t be both.” “The heart and the brain.”

Complementarity I: What do you do every day with your child? What are the daily routines? F: My wife can tell you better.

Complementary with shared values “Anyway, I think we represent the two sides of parenting but we have the same values.”

Symmetry I: So it’s sort of like you both can do it all, you tag off back and forth? M: Yeah. He’s just as good as I am.

Symmetrical Relationship "I want my kids to see that in today’s society it’s not just the traditional breadwinner, it’s the caregiving also because you need both, I think you need both as a parent."

Shared caregiving… I: Caregiving is sometimes more associated with the roles of mothers and women. What are your thoughts on this as you parent your child? F: I think it’s a pile of crap.

Integration of gender identities "I look at this really as a balance. A balance of the male and the female. Whether you are male or female, the challenge is to get that balance within yourself. Quite often in relationships people are looking to the other person to fulfill that aspect of themselves, which is kind of like a crutch. It’s depending on that other person to fill your need and really, I think what we’re discovering is that we have both. “

Complementarity AND Symmetry…  Most couples combine elements of complementary and symmetrical parenting.  Not either/or but elements of both…… a continuum

Domains (Caregiving, household management and breadwinning) Combined (some specialized AND shared roles) Symmetrical (shared roles) Complementary (specialized roles) Parenting roles: Complementary and/or Symmetrical

Adaptation There is not just one model for success.

The emerging model…  Labels such as “traditional,” “transitional,” or “egalitarian” do not do justice to multiple influences that come together to shape the parenting relationship  Adaptation is idiosyncratic, relative, practical and reflects “what works” for the couple  Current state reflects best available choice(s)  Success takes different forms at different stages of the relationship

Influential factors… Multiple factors shape parenting roles and experiences: > Child factors and health condition > Individual parent qualities and characteristics > Relational factors: child, couple, extended family, friends > Gender norms and identities > Culture > Religion and spirituality > Social: resources, work, social norms, etc.

Relational Adaptation Model for Co-Parents Individual Biology Birth order Gender identity Strengths Preferences F of O experience Etc. Child Age, sex Health condition Care needs Severity/prognosis Characteristics Etc. Social Culture Religion Spirituality Work Resources Friends Discourses Etc. Relational Couple factors Extended family SES factors Etc. Time

Adaptational processes and factors for success  Flexibility  Response ability  Communication and problem solving  Meaningful emotional connection (“us”)  Shared meaning and values  Negotiation of roles (implicit/explicit)  Adequate social support (targeted to need)

Attributes of success and satisfaction  Balance  Fairness  Choice and “fit” for each individual  What “works” for the couple

Notion of “GOOD ENOUGH”  For most in the study, the parenting configuration was not perfect but was “good enough”…  But there is a tipping point when it is no longer good enough...  Changes in care needs  Loss of sense of mutuality or fairness  Work changes  Availability of social support  Leads to conflict, dissatisfaction, disengagement…

Conclusions 1. One size does not fit all  successful parenting configurations may take different forms at different stages of the relationship 2. Complementarity and symmetry are useful concepts for understanding how parents work out their roles 3. A multifactorial model is needed to understand the complexity and range of factors that influence parenting roles and identities

Conclusions cont’d… 4.One parent’s story about the relationship is insufficient to understand the total gestalt 5. More father (or mother) involvement isn’t necessarily better – it must ‘work’ in the context of the couple relationship 6. Parenting roles and behaviour are best understood within the context of the couple relationship

Conclusions cont’d… 7.Successful parenting configurations may take different forms at different stages of the relationship depending on child’s age, gender, care needs, etc. 8.Regardless of how couples divided their roles and responsibilities, satisfied parents had shared goals and parenting philosophies. 9.In symmetrical arrangements, parents may have primary or secondary roles regarding specific functions depending on time, preference, skill, etc.

Conclusions cont’d… 10.For most couples, the parenting configuration was not perfect but was “good enough,” but there was a tipping point that led to conflict for some couples. 11.For couples who were dissatisfied with their parenting arrangement, division of labour, disagreements about parenting goals and philosophy, and lack of a meaningful emotional “us” were identified as key factors.

Discussion