Functional Caregiving: A New Construct for Mother's Caregiving to Adult Children with Intellectual Disabilities

Abstract

Researchers currently lack a sound theoretical base for studying mothers' caregiving of adult children with intellectual disabilities. Functional Caregiving is a new construct proposed to describe a three-level task hierarchy of mothers' caregiving tasks. Preliminary results with the Rasch measurement model provide empirical support for this Functional Caregiving construct. A theoretical perspective on mothers of children with intellectual disabilities based on Functional Caregiving would meet needs not currently addressed by the Person-Centered Planning philosophy of caregiving. Implications are discussed for clinical practice, nursing-based caregiver research, and caregiving by other care providers.

Keywords: Functional Caregiving , Mental Retardation , Adult Child , Intellectual Disability , Rasch measurement model

THE NEED

Nurses and other members of the multidisciplinary team working with individuals with disabilities use the Person-Centered Planning (PCP) approach to guide their practices. PCP, a theory currently used by health and human services agencies, is a long accepted ideal for providing effective services and support to individuals with intellectual disabilities⁹. PCP philosophy puts the intellectually disabled individual at the center of several concentric circles of support. The circles surrounding the individual with disabilities are defined by persons and/or systems most important to and needed by the individual to function well and to grow successfully⁹. The individual with a disability is within the first circle. The circle immediately surrounding the individual is occupied by the primary caregiver. Other family members may occupy this circle as well, depending on their level of direct caregiving. The next circle is comprised of the professionals, including direct care and non-direct care staff, who provide varying degrees of services and support. The services and supports provided are designed to help meet the needs of individuals in group living situations, as well as the needs of those who remain in their own homes. The two next circles, fanning outward respectively, include the local community and the wider world community. Members of each concentric circle circumscribe and support the central mother-child dyad. Empirical investigations have found support for a general PCP model. For example, Bezruczko¹⁰ found a model such as PCP that described competency development among socioeconomically disadvantaged children receiving support services in Child-Parent Centers, which suggests that PCP may offer fundamental benefits to effective psychosocial interventions in general.

PRELIMINARY EXPLORATION AND RESULTS

Rehabilitation research has successfully implemented objective measurement methods to develop a variety of functional assessment scales. Granger and associates¹¹ reviewed primary functional assessment instruments and emphasized their importance for over 70 percent of persons receiving Medicare annually. Instruments such as FIM^sm (Functional Independence Measure) to measure functional independence¹², ADL to measure activities of daily living¹³, and SF-36 to measure physical and mental health components^{14, 15} are now the psychometric foundations for effective rehabilitation assessment.. Several prominent properties of these scales include persons and items on a common hierarchy, a uniform metric, and separable model parameters that establish sample-free measures essential for measuring human performance on a linear scale¹⁶. Inspired by these advances in rehabilitation research and guided by the PCP model, Chen¹⁷ and colleagues proposed a single, broad, overarching, construct - Functional Caregiving - that adapts methodological advances in rehabilitation assessment to caregiving assessment. Chen¹⁷ implemented this construct with 61 survey items and presented them to mothers of intellectually disabled children. The items asked each mother to rate her confidence in performing various caregiving behaviors for her adult child with intellectual disabilities, and included issues such the mother's confidence in serving as the child's legal guardian, arranging the child's leisure activities, and assisting the child with finding a job. Responses from 108 mothers were analyzed with the Rasch model for rating scales^{16, 18}, a measurement model that transforms raw scores, sometimes called total scores, into linear measures on an equal interval scale. An important feature of this analysis is that mothers and items are represented on a scale map that ranges from less effective to more effective caregiving. This map is very useful because mathematical estimation of items on the map transcends any particular data sample. This means that the item hierarchy will reoccur with any sample of mothers with intellectually disabled adult children. When Chen¹⁷ applied this methodology to empirical data, preliminary analyses showed that "items and persons define a common variable and the item hierarchy confirms a three-category structure"(p. 19). Figure 1 (at end of this article) presents results from that investigation. More effective versus less effective caregiving in this Functional Caregiving construct reflects a mother's ability to handle the dynamics of her knowledge, skills, and personal resources to achieve her caregiving goals in the caregiving environment. As shown in Figure 1, at the lowest level of caregiving, mothers use advocacy knowledge to represent the needs of their adult children with disabilities. For example, the mother represents her eligible disabled child as payee for governmental resources. At a second, higher level of caregiving, mothers use their knowledge and resources, including physical energy, to perform personal caregiving tasks for their children with disabilities. These tasks include feeding, grooming, clothing, and so on. At the third level of caregiving, mothers use communication and political skills to seek support from community agencies to enhance their children's community participation. For example, mothers may use these skills to ensure that their children attend school or are included in social/recreational activities. In this overarching construct, the mother as primary caregiver is a representative, a personal caregiver, and a community liaison for her intellectually disabled child.

The underlying theme for this hierarchical structure of three caregiving levels is the capacity of a mother to integrate knowledge, skills, and personal resources when performing caregiving tasks for her adult child with disabilities in a caregiving environment. Knowledge refers to organized information ready for use. Skills are the mother's techniques or strategies for administering caregiving tasks. Personal resources refer to the options available to the mother and family in the immediate surroundings. The caregiving environment refers to the physical and psychological surroundings of the mother at the point of the care delivery.

PROPOSED EMPIRICAL MODEL

Current family research focuses on a multidisciplinary approach to studying family functioning, but reveals little consensus about constructs central to family functioning⁷. Research from the life course perspective has unsuccessfully attempted to map construction of family giving^19-21. Because tasks, functions, and norms all permeate the constructions of caregiving, there is no universally agreed upon definition of family caregiving^{19, p.344}. In studying family support models, Grant and associates¹⁹ identified salient features of family caregiving. These are: (a) family caregiving has a purpose linked to the family life cycle²²; (b) the family caregiver assists members to find a sense of identity in the face of difficulty^{20, 21}; and (c) family caregivers continue to learn and provide care to meet members' needs. In another study, parental caregivers were found competent to dispense available resources to their disabled children²³. They were also able to differentiate levels of adequate time use and were instrumental resources for various caregiving tasks. In contrast, qualitative approaches to the study of family impact are building detailed and nuanced accounts firmly grounded in the experiences of the participants. These studies have an inherent flexibility to raise issues not addressed by current theories⁷. For example, Shearn and Todd²⁴ use day-to-day activities to describe the parental work in caregiving for their adult children with learning disabilities.

In light of the current research and our clinical experiences, we propose an empirical model that describes the mother's caregiving tasks to her adult child with intellectual disabilities. Assumptions are: (a) family caregiving occurs in the social context surrounding the mother and her family; (b) the mother's caregiving is purposeful, with the intention to assist the adult child with disabilities to fulfill his or her basic human needs^{22, 25, 26}; (c) the mother considers her personal, mental, social, and financial resources in her provision of care²⁷; and (d) the mother selects the caregiving tasks that are functionally complimentary or supplementary to her child's ability to take care of basic human needs²⁰. The caregiving tasks are hypothesized to have a three-level hierarchy: advocacy, personal caregiving, and community relations. Advocacy requires the mother to use her knowledge in performing the caregiving tasks. Personal caregiving requires the mother to use her knowledge and resources, including physical energy. Community relations require the mother to use her skills to seek support from community resources that will enhance her child's community participation. An underlying theme for the three levels of task hierarchy is the construct of Functional Caregiving.

DISCUSSION

Our clinical observation revealed that, in general, no one knows the details of caregiving for an adult child with intellectual disabilities better than the adult child's mother does. The mother has learned, often by trial and error, how care is most effectively given, and what works and what does not work²⁸. Through learning and inspiration, mothers form a pattern of caregiving behaviors that reflect their integration of knowledge, skills, and resources within their caregiving environment. In essence, this is the base for our theory development.

Functional Caregiving provides an objective context in which assessment of the mother's capacity to care for her adult child is possible. It explicitly focuses on skills and knowledge that the mother uses in the provision of care. Potential contributions of the construct of Functional Caregiving rely on further studies. Through replication and verification, the knowledge it provides should have implications for delivery of services and caregiving research.

The proposed empirical model may be incorporated into PCP philosophy, especially as it relates to the circle of the mother-child dyad. The construct of Functional Caregiving assists the care providers to understand the contents and/or the process of the mother's caregiving behaviors. In turn, the construct can serve as a reference for provision of care, such as case management. Care providers may also use the construct to plan enrichment activities for the mother, especially for caregiving behaviors in which the mother has less confidence. Nurses and other members of a multidisciplinary team will find the construct helpful in planning care for their clients. The construct of Functional Caregiving also provides a theoretical base for guiding clinical services. For example, within the mother-child dyad, nurses work to support the mother's caregiving and build the mother's caregiving skills to enhance her effectiveness in caring for the adult child. Further, the caregiving task hierarchy can be used to determine the need for transition of caregiving from the mother to other caregivers. As an example, the construct of Functional Caregiving can be used to determine the age at which, or the caregiving level at which, an aging mother should be relieved of caregiving responsibilities. On the other hand, with a relatively young mother, the construct may be used to determine the need for enhancement of caregiving skills. In addition, the quality of care provided to an individual should be culturally sensitive. The Functional Caregiving construct provides a means to achieve culturally sensitive care through established caregiving behaviors of the mother. Moreover, the task hierarchy identifies discontinuities in caregiving. To illustrate, a mother who becomes less capable of providing care may show regression on the caregiving task hierarchy. Collectively, the construct of Functional Caregiving provides aggregate data that may be used to monitor the quality of care provided by the caregivers of an agency (Figure 1).

Figure 1. Three Levels of Mothers' Caregiving Task Hierarchy

Figure 1. The Functional Caregiving construct ranges from low effectiveness to high effectiveness. More effective mothers are positioned in top half and less effective mothers are positioned much lower. More difficult tasks are position near the top, while easier tasks are positioned near bottom.

Although mothers' caregiving for individuals with disabilities often lasts a lifetime, primary care mothers, as a group, have not been recognized as being at risk for healthy living. Studies have shown that the aging process and declining health have made caregiving more difficult for aging mothers^{4, 6}. The construct of Functional Caregiving will be helpful in identifying vulnerable mothers, and certainly aging mothers, of adult children with intellectual disabilities. The U.S. Department of Health and Human Services' Office of Women's Health has recognized special populations in their research agenda²⁹. Aging women who are the primary caregivers of adults with intellectual disabilities need to be among those recognized. It is timely, indeed, to develop a theoretical base for mothers' caregiving. This theoretical development, however, needs to be followed by efforts to formulate health policies that target the needs of these women.