Chapter 14 Family Perspectives on Occupation, Health and Disability Mary C. Lawlor and Cheryl Mattingly

“Individuals, families, communities and whole populations engage continuously in a closely bound, interdependent set of occupations on a daily basis. One of the most significant and universal aspects of these daily rounds of occupations is that they always occur in several contexts simultaneously. The relationship is a dynamic one: occupational norms and forms and patterns of engagement are shaped by these contexts and to some extent, these contextual forces in turn are influenced by the net impact of occupations performed both over time and in time.” —Gail Whiteford (2010, p. 135)

Learning Objectives Describe characteristics of contemporary family life. Identify ways to understand family occupations and the implications for collaborating with families. Discuss how family members might experience illness and disability and how these experiences are situated in family life. Recognize the expertise that family members have and bring to health care encounters, including OT sessions.

Learning Objectives (Continued) Understand the health care encounter as a complex social arena in which perceptions and decisions about care are created, contested, and negotiated by multiple social actors. Describe knowledge, skills and behaviors that facilitate effective “partnering up” and collaboration.

Family Life Family life is dynamic, complicated and multifaceted Families are the primary social unit by which children first learn about relationships and occupations Family occupations are meaningful engagements of physical and emotional resources to support family life and ongoing development of family members Co-occupations are occupations that are engaged in or shared by two or more persons

Why are Families Important in Health Care? Families matter to people who experience illness or disability, no matter: the age; Ethnicity; socioeconomic status; or geographical location

Why are Families Important in Health Care? (Continued) Families shift in response to the issues raised by having a family member with an illness or disability Roles change Relationships change Activities and occupations change

Family-Centered Care Family members’roles go beyond health care providers’ recommendations include partnering with clients and professionals in decision making OT practice is altered when family members included in therapy Challenge: OT practitioner is to collaborate with clients, families, and team members to design a program that builds on strengths and addresses needs

Family-Centered Care requires: practitioners to effectively and compassionately listen to concerns, address needs, and support hopes of clients and families; collaborative efforts of family members and practitioners; partnerships based on respect, rapport, trust, and reciprocity; and complementarity

Complementarity All parties contribute: Knowledge and expertise Perspectives and understanding Practical reasoning and problem-solving strategies Desires and hopes Strengths and assets

The Processes of “Partnering Up” and Collaboration Collaboration involves complex interpretative acts in which the practitioner must understand the: meanings of interventions; meanings of illness or disability in a person and family’s life; and feelings that accompany these experiences

Troublesome Assumptions About Disability, Illness Experiences, and Families The disability belongs to the individual There is only one perspective per family Illness and disability generate only negative experiences The professional is the expert

Family Experiences and OT Practice A longitudinal ethnographic study – subtle aspects of therapy impact on experiences of family members, practitioners and outcomes of therapy Key elements: seemingly casual conversation; brief moments of social engagement; attention to connectedness; and shared moments in the course of therapy

Getting to Know Families Attempts and approaches to getting to know families should be: noninvasive; sensitive; nonjudgmental; and respectful of privacy