Abstract
Introduction
As a population, the ageing trajectory for people with intellectual disability is nearing that of the general population. Given that many individuals with intellectual disability continue to live into their middle adult years with someone they identify as family/whānau – this has implications for all parties. There is an emerging body of literature that identifies some of the challenges faced by this largely ‘hidden’ population. Whilst research about future planning is not necessarily a new phenomenon for this specialist field, the nature of ageing with intellectual disability, the characteristics and dynamics of caregiving and receiving within family/whānau, and the relationship this has to decision-making about ageing, has received limited attention. Hence the aim of this thesis was to explore perspectives about getting older and future planning for people with an intellectual disability and their family/whānau.
Method
The qualitative design for this study was based on Charmaz’s Constructivist Grounded Theory. This methodology was informed by the axiology of what is ethical (transformative paradigm), and the ontology of relativism both of which underpinned the interpretive constructivist epistemology embedded in this grounded theory approach. Non-probability and snowball sampling were used to recruit people with intellectual disability aged 40 years or older, living with someone they identified as family/whānau and whom they nominated to co-participate in this research. Memo writing, interviews, concurrent data collection and theoretical sampling are features of a grounded theory approach that were used across participant groups. Photo elicitation was also used with participants who have intellectual disability to enhance and promote their contribution and inclusion in the research, and also served as a key theoretical sampling approach. Constant comparison data analysis was undertaken between and across participant groups.
Results
A total of 19 people with intellectual disability and 28 family/whānau were interviewed and the findings revealed a lifelong engagement with caregiving and receiving that was influenced by factors both internal and external to the living situation. Key features of this engagement were identified: Transitions across the individual and collective life courses were denoted in terms of decisions about the member with intellectual disability remaining at home and the subsequent changing roles, responsibilities and expectations within, and between, all in the network of care. Three categories exemplified this journey, namely; Riding the Waves, Shifting Sands – Changing Tides and Uncovering Horizons. Whilst these may appear to be linear, the perspectives and experiences expressed by participants both explored and demonstrated a reflexive interrelationship between these which is posited in Navigating Ever-Changing Seas: An Emergent Theoretical Model. This informs and illustrates the cyclical, evolving and reciprocal nature of caregiving relationships over time, identifies the influences thereto and the impact these have on the person with intellectual disability and those in their family/whānau system of care in terms of their view and experience of ageing.
Discussion
Navigating Ever-Changing Seas: An Emergent Theoretical Model provides a platform to understand the nature of caregiving and receiving for people who are ageing with intellectual disability and those they identify as family/whānau. The relationship of family/whānau who have a member with intellectual disability is seen to be complex, dynamic, and trans-generational. Each person has an experience and perspective of their identity and relationship with others which has been informed by the past and current philosophies of the caregiving network itself, as well as the wider, external community and socio-political context across the lifespan. As the territory for each person and life-stage changes over time, so does the constructed map (individually and collectively): This impacts upon the perspective and prospect of ageing, future planning, respective and projective roles and responsibilities. It is pivotal that these perspectives do not remain hidden as recognising them will enable and mediate the development of inclusive policies for each member of this caregiving network in regards to practice, research, service planning, development and delivery.