Support of Family Caregiving for Children with Special Needs*

Karen Pridham, PhD, RN
Professor Emerita, Nursing and Family Medicine
University of Wisconsin-Madison

Rana Limbo, MS, MSN, RN
Research Assistant, Doctoral Candidate
School of Nursing
University of Wisconsin-Madison

Michele Schroeder, MS, RN
Research Specialist, Doctoral Candidate
School of Nursing
University of Wisconsin Madison


Family-centered care is a goal that is generally shared among clinicians who work with children with special needs and their families (Brooks, 1997; Letourneau & Elliott, 1996). Making the family the focus of clinical practices does not necessarily bring the family into a central and powerful role in the care of the child within the health-care delivery system. Nor is family-centered care automatically realized when there are intentions to fully involve families in the health-related care of their children. The goal of bringing families into a more central position in the health-related care of their children with special needs rests on the assumption that competencies are needed to be in this position. Competencies are constituted of knowledge, judgment, skill, and resolve employed dynamically in a specific setting or context, and are a function of available environmental conditions, structures, and supports (Fischer, Bullock, Rotenberg, & Raya, 1993). Another assumption pertinent to family-centered care is that families are supported in acquiring caregiving competencies through participation, guided by clinicians, in caring for their child's special health needs.

Little is known about what constitutes participation for a family, how caregiving competencies that need development are determined, and the clinical processes that support the development of these competencies, including participation in the child's care. The purpose of this paper is to describe an intervention, guided participation, for support of the development of family caregiving competencies.

Background of the problem

Guided participation involves deliberate activities to support families with children with special health care needs in acquiring and maintaining caregiving competencies. These activities are intended to bring a caregiver who is a novice in caring for a child with special health needs into competent and full responsibility for caregiving practice. This practice is described by a philosophical orientation, organized and patterned on often routine activities, technical knowledge and skills, and the involvement of others for direct assistance or for problem-solving aid or emotional support.

A mother's participation is developed through her relationship with a guide, a person who is skilled or resourceful in the processes of guidance and in the domains to be developed. For our study, this person is a nurse. The guidance occurs through the interaction of the mother and nurse as the mother engages in or deliberately recounts caregiving activities (i.e., the practice or pattern of activities that are routinely or repeatedly performed to accomplish caregiving). The nurse initiates processes that are intended to support the mother in becoming more competent in specific health-related aspects of caregiving.

Guided participation is grounded in three premises. The first premise is that the needs of children with special health care needs and their families are best met when families are competent in the day-to-day and special care of their child and in communicating and problem solving with health-care providers, social service staff, and educators (here all referred to as clinicians). Second, families must be committed to caregiving, value the relationship with their child, and know the child as a person with needs, agendas, and preferences, all of which are expressions of caregiving competencies. Third, the family and child are supported by clinicians who are sensitive and responsive to family goals, resources, and competencies in caregiving for both day-to-day and out of the ordinary needs.

The clinical rationale for our program of research concerning guided participation is that clinicians and families who relate to each other in a guided participation will enable co-participation of families with clinicians in managing the child's care. Co-participation, as an approach to family-centered care, avoids either paternalism on the part of the clinicians, an isolationist, self sufficient stance on the part of family members, or abdication of decision making by either clinicians or family members.

We selected a population of very low birth weight (VLBW) children to examine the processes and outcomes of guided participation as a clinical intervention. VLBW infants weigh less than 1500 grams or 3 pounds, 5 ounces at birth. About 50,000 VLBW infants are born annually, making up about 1.4% of all births (Bennett, 1997). This population is large compared to other populations of children with special needs and growing (about 7 times larger in the last 20 years) (Lewit, Baker, Cormon, & Shino, 1995; Shiono & Behrman, 1995). The prevalence of major neurodevelopmental handicaps (e.g., cerebral palsy, mental retardation, sensorineural hearing loss, visual impairment) is about 15 - 20% for these children. An additional 15 - 25% of VLBW children have developmental and/or behavioral problems (e.g., cognitive delay, speech and language disorder, neuromotor abnormality, perceptual problem, limited social-emotional competence) that interfere with or challenge daily living function. In addition, VLBW children are more likely to have acute and chronic physical conditions, most frequently respiratory and gastrointestinal problems. Growth faltering or deficiency is common (Hack, Klein, & Taylor, 1995). Due to a higher incidence of developmental, behavioral, health, and growth problems, VLBW children use health services to a greater extent than other children (Paneth, 1995) and consume about 35% of the health-care costs for infants in general (Lewit et al., 1995; Shiono & Behrman, 1995).

Because of the child's risk for or actual presence of one or more developmental, behavioral, physical health, or growth problems, families of VLBW children must develop competencies in caregiving that extend beyond those usually expected of or needed by a family of a healthy, normal birth weight infant. Despite the magnitude of physical health, growth, developmental, and behavioral problems, the extensive challenge of day-to-day caregiving for a VLBW child, and the call beginning over 10 years ago for support of community-based, family-centered care (Shelton & Stephanek, 1994), little progress has been made in providing this support (CCCID, 1997). Concerns recently voiced by Wisconsin families of premature children and clinicians who work with them include services that do not address family experiences and contributions to care and deficient collaboration and poor communication among clinicians and families (WAPC, 1997). Within families, communication may be ineffective and even non-supportive (Patterson, Garwick, Bennett, & Blum, 1997). Families may not have the resources or skills to understand or problem solve their VLBW child's nutritional, physiologic status, physical health, growth, developmental, and relationship needs.

Need for support in developing caregiving competencies is illustrated by a mother who was afraid to make changes in her child's diet, wanted her child to outgrow her health vulnerabilities as quickly as possible, and advanced her child to table foods too quickly for the child's tolerance. The Project nurse observed that the mother's focus on technical details of feeding her child outside of a context of goals for nutrition, feeding satisfaction, and skill development left her confused and unfocused, resulting in a disorganized approach to feeding. The nurse helped the mother develop competency by structuring questions to get answers to specific questions and to keep the major goals in mind (e.g., What is going on? What should things be like? What do I need to do to support my child's nutrition and satisfaction from eating? What would attending to these things mean for me? What tells me how well things are going?) Processes of guided participation included clarifying and elaborating the mother's goals, wondering (reflecting) with her about what was happening, and exploring her feelings about caregiving. By the end of the child's first post-term year, this mother had a clear sense of criteria of adequate feeding, anticipated developmental changes in the child's feeding behavior, and used a systematic process to solve problems and make decisions.

The issues of family caregiving competencies and infant development, behavior, growth, physical health, and health-care for VLBW children are likely to be common to children with chronic health conditions in general (Stein, 1995). Theoretically, the outcomes for the child of all of these issues may be improved through support of the development and maintenance of family caregiving competencies. Furthermore, the relationships of families with NICU and community-based clinicians may be strengthened as family caregivers become more competent in communicating and problem solving with them. Family caregivers may gain in psychological well being, personal resources, and social support through applying the communication and problem-solving competencies developed for caregiving to other life arenas (Kitzman et al., 1997). Mothers, who generally are the primary caregivers for their children, as well as the child stand to gain through development of caregiving competencies and participation in guided participation (Rogoff, 1989).

The Research Plan and Methods

The objective of the longitudinal randomized clinical trial is to learn how guided participation, compared to the more standard follow-up of VLBW infants, affects the development of mother's caregiving competencies and infant growth, development, and health outcomes. Approximately 45 mothers, their VLBW infants, and family members who participate in the infant's care will have completed this study by early 1999. Families are recruited to the study from Milwaukee Level III nurseries. About half of the mother-infant dyads are in the intervention group. This group participates in guided participation, initiated by a Project nurse during the infant's NICU stay. The intervention continues, following NICU discharge to home, with the Project nurse working in collaboration with primary-care and other community-based clinicians. The follow-up (comparison) group receives periodic monitoring of nutritional intake, growth, health status, and development.

Data concerning this practice are collected by Project nurses through such means as video-assisted interview, discussion of feeding situations, and observation of caregiving. To examine development of caregiving competencies and the effects of the intervention on outcomes, data on nutritional intake, growth, and physical health status for both the intervention and follow-up groups are collected at specific post-term ages by Project nurses. These nurse are assigned to one or the other of the study groups, intervention or follow up. The family member selected by the mother to participate in the study interacts with the mother in two video-taped sessions of problem-solving infant care issues. Developmental assessments are done by an occupational therapist. All data are collected in the home.

Through our previous studies of mothers' problem solving of feeding issues for their normal birth weight (NBW) infants or VLBW infants (Pridham, Sondel, Clark, & Brown, 1994), we identified six domains of family caregiving competencies that are relevant, we believe, to any family caregiving activity. Four of these domains were identified from the analysis of the logs that 62 mothers of NBW infants kept through the infant's first 3 months concerning things on their minds about the infant's care (Pridham, Chang, & Hansen, 1987). These domains involve: (a) the techniques, methods, and processes of giving care for sustenance of human functions and for special health and developmental needs; (b) communicating with others, both family members and clinicians, about the infant's needs with the aim of getting information, advice, or direct assistance or participating in the infant's care: (c) problem-solving infant-care issues with family members or clinicians; and (d) relating to the infant, including being with the infant and knowing the infant as a person.

The relationship domain of competencies was specified more precisely by Thoyre (1993) through dimensional analysis of focused interviews of 12 mothers of both NBW and VLBW infants concerning the development of their participation. The relationship competencies, being with and knowing/relating to the infant as a person, are central to a mother's motivation as a parent, to her empathic understanding of her infant's needs and responses, and to her reflective, sensitive, and flexible (i.e., adaptive) response to her infant (Bowlby, 1984, 1988; Rubin, 1984; Winnicott, 1987). The relationship competencies support the development and employment of the other competency domains (providing sustaining care, communicating, and problem solving). The competency domain most recently identified, from intervention work with mothers in our current intervention study, has to do with the regulation of emotions, either the mother's own or her infant's emotion. Regulation and sharing of emotion is important for adaptation to challenges and engagement in learning opportunities (Emde, 1989).

The Intervention

Guided participation, as we are developing it, is described in detail in Pridham, Limbo, Schroeder, Thoyre, & Van Riper (in press). Unlike extant or recently published interventions that: (a) are primarily focused on infant outcomes rather than on family caregiving as a practice (Als, 1992), (b) have a defined curriculum (e.g., Nursing Systems Toward Effective Parenting-Preterm, Kang et al., 1995); (c) address behavior change (O'Brien & Baca, 1997); or (d) promote solution of specific problems (Wasik, Bryant, Sparling, & Ramey, 1997), the guided participation activities are addressed to a family's lifelong development of caregiving competencies and are formed and specified by the mother's caregiving activity or recounting of it at the moment (Pridham et al., in press).

Guided participation has theoretical origins in pragmatic philosophy of mind and social-cultural approaches to learning. According to Dewey (1938), thinking develops and learning occurs through experience with the problems and challenges of life. From Rogoff's (1989, 1990, 1993) perspective, informed by Vygotsky's (1978) concept of the zone of proximal development, and from Wertsch's (1991) theory of mind as a social-cultural phenomenon, learning is a social activity. Learners participate in activities beyond the competence they would have if working independently or in isolation of more expert persons. Through this participation they develop their own practice. The social arrangement for learning of everyday practices, such as caregiving for a child with special needs, is analogous to an apprenticeship. In an apprenticeship, the novice is an active participant in learning a practice. The apprentice expects, seeks, structures, and sometimes demands the assistance of the master practitioner or guide.

Lave and Wenger's (1991) ideas extend the social-cultural features of learning as a concomitant of participation in everyday practices as well as of deliberate and explicit training or apprenticeship for specific practices. A practice is a customary and patterned system of activities directed to a goal of social-cultural importance (Lave, 1996). Through engaging in practice as a legitimate participant, a person moves from peripheral to more central and responsible participation. An important support for this movement or learning is the coparticipation of the "master" or guide in the practice (Lave & Wenger, 1991). Coparticipation means that the guide understands and appreciates what the learner is experiencing and fine tunes the type and processes of support provided to advance learning in the context of this experience.

Our experience with providing guidance to mothers of very low birth-weight infants in developing their feeding practices and, thereby, becoming more competent in feeding, has contributed several perspectives additional to those in the literature. First, as a consequence of coparticipation in caregiving activity--the mother, initially, as novice and the Project nurse as guide--both the novice participant and the guide have an opportunity to learn about the expectations, intentions, and meaning to the other of the caregiving experience. Second, mothers may not readily engage, if they engage at all, in some aspects of participation that are known by the guide to be important to the child's growth, development, and well-being in general. Mothers, for example, may not understand or appreciate a VLBW infant's need for close attention to feeding behavior and dietary intake in light of respiratory and gastrointestinal functions and patterns of growth. The focused and informed attention that may be needed by a VLBW infant may be discrepant from a mother's participation for older children or it may be discordant with family ideas of how a child is properly fed. Or the focused attention to specific caregiving issues that is encouraged by the guide may be an unwelcome reminder to the mother that her child has special needs.

Drawing on the guided participation activities that Rogoff (1990) formulated from observations of adults instructing children in everyday activities and from our own experience in engaging with mothers of VLBW infants in guided participation, we have identified four primary activities or processes, each with subprocesses, that may be employed by a guide. These processes are: (1) developing joint attention; (2) structuring information-gathering; (3) engaging in problem solving and learning; and (4) supporting participation in and responsibility for participation.

Developing joint attention with the mother to whatever aspect of the caregiving that needs attention, from the standpoint of the infant's well being, the mother's developing competence, and the family's sense of integrity, involves a sense of mutuality (Winnicott, 1989), and is fundamental to all other processes. At times, the nurse must gain, cultivate, amplify, or regain attention. The process of structuring information-gathering involves making opportunities for a mother's observation and reflection, providing tools for gathering information and making assessment decisions or evaluations, organizing a task into manageable subtasks and staging or phasing participation, and monitoring how the participation and, consequently, the learning, is going. This process may include structuring opportunities for a mother to problem solve with a family member or a clinician. Engaging in problem solving and learning is a process that includes building connections from the understandings and skills a mother has now to new ones, elaborating on or expanding thinking and feelings, reflecting with a mother about what is happening and why, developing and applying criteria of desired outcomes, whether short- or long-term, testing hypotheses, and examining and revamping actions. Supporting participation and responsibility for participation as competence is developed is a process that includes developing awareness of the responsibilities and the capabilities a mother has, identifying with her when to seek help and finding ways to get help, and supporting her in making and implementing plans.

The ultimate goal of the guided participation is development of an adaptive working model of caregiving. A working model includes expectations, intentions, and meanings concerning caregiving events and activities that the caregiver is experiencing at the moment (Bowlby, 1984; 1988). An adaptive working model, i.e., one that is supportive of the infant's nutrition, development, growth, physical health and relationships, gives a caregiver optimal preparedness for what is to happen, operates with flexibility and openness to whatever information is relevant to the child's best interests for the immediate and long-range future, and considers the child as a person with needs, agendas, and preferences. Furthermore, an adaptive working model involves the caregiver in processes of reflecting on or wondering about what is happening and why; integrating mother and infant agendas with the aim of constructively supporting or negotiating both; and keeping in mind multifaceted domains of infant experience or need, e.g., nutrition, growth, learning, and relationships (Bowlby, 1984; 1988; Bretherton, 1991; Main, Kaplan, & Cassidy, 1985).

Guided participation is distinguished by a dynamic, ongoing process that relates to what is going on and what is needed in the context of the caregiving activity and for the development of a caregiving practice for which the mother is fully responsible. For infants in their first year, feeding is a central caregiving activity. This process is accomplished through the joint reflection of the mother with the nurse who guides the activity. The nurse's written record (progress notes), organized by the caregiving issues that are foremost in the minds of mother and nurse, is an aid for exploration of the mother's development of competencies and for planning for guided participation. This plan is always flexible and open to revision at the next encounter in response to the mother's expression of her working model of caregiving as she engages in giving care or describes recent caregiving activities and to the mother's personal, family, and community events. Ongoing supervision and consultation of the work of the nurses who function as guides is required because of the nature of guided participation and what it demands. These demands include: (1) technical knowledge of the child's special health needs; (2) creativity in relating to families concerning these needs; (3) sensitivity to the meanings that the child, the special needs, and the guided participation have for families; and, (4) a relationship based in trust and regard. The processes of the supervision and consultation are parallel to those of the guided participation of mother/family member with the nurse.

Case Illustrations

The illustrations that follow concern four infants, three of whom weighed 700 grams or less at birth and were born at 23 or 24 weeks gestation. The fourth infant weighed 1000 grams at birth; she was 28 weeks gestation. Each case illustrates one of the four major processes of guided participation.

Developing and sustaining interest; focusing/refocusing

The nurse, after weighing the infant, has examined with the mother, the infant's growth graph and caloric and protein intake. The infant's growth is faltering, and caloric intake is low. This little girl could use an additional 3 ounces of her special formula. The options would include the parents waking the baby for a feeding at night. The nurse understands how difficult this could be for this working mother. An alternative approach would be for the mother to sustain her infant's interest in feeding and keep her at each feeding longer. This might be helped by the mother's use of her voice, gaze, and smile. Using herself in this manner has not been part of the mother's feeding practice, in part, because the mother learned from the neonatal intensive care unit staff that the infant could handle very little stimulation without getting disorganized, but also because the mother has not learned that her voice, gaze, and smile could be useful to her infant. The nurse believes, however, that the mother's concern about her little girl's growth could help her develop her use of herself during feeding. This relationship competency would support the infant's organization of her behavior and more effective feeding. The competency would also aid the mother in learning more about her baby, what she needed and wanted, and what she preferred and enjoyed.

After exploring with the mother her sense of the infant's capacity to handle increased stimulation, the guided participation process that the nurse used was to develop interest and focus through an "experiment." In this experiment, the mother would take note of her infant's response to her systematic use of her voice, gaze, and smile, singly at first and then in combination. She and the nurse would discuss the results of the experiment in a week.

Structuring learning: Providing information

To support a mother in developing competency in describing, with clinicians, concerns about her infant's feeding, a nurse structures a setting for this description and subsequent learning about the issue of her concern. The structuring that the nurse does provides a focus for joint or mutual attention. The concern the mother states has to do with the long time between the last feeding at night and the first feeding in the morning, and the possibility that the baby may not have taken in enough to tide her over this long stretch of time. The nurse structures a problem-solving framework for discussion of the concern by exploring with the mother how she has handled her concern and identifying the types of options the mother might have.

Engaging in goal-directed activity: Problem solving

The nurse and mother have reviewed the growth chart of an infant who began to falter in her growth about 2 months ago. As they jointly attend to the growth issue, the growth graph provides a structure for learning and problem solving, and, together, mother and nurse connect the infant's growth to recent experience, including illness and poor appetite. The mother identified the criteria that she would use for contacting the baby's doctor. Through the process of jointly engaging in problem solving potential reasons for the poor growth, the infant's current state of recovery and expected catch-up growth, and development of a plan for discussing the infant's health with her pediatrician if her appetite should not return, the mother further develops her competency in collecting, differentiating, and integrating several types of information and identifying criteria for decision making..

Developing responsibility

To learn how a mother and father are patterning their daughter's feeding, the nurse explores with them what the child's feeding is like. The little girl, a toddler, has a history of chronic lung disease and very poor growth. After learning from the parents that the little girl is not eating well at mealtime, but is "grazing' throughout the day, the nurse explores with them the meaning and significance to them of their child's eating behavior. After the parents state that it is not a problem, the nurse recalls (or brings to mind) for them the goal they have had of having meals for the little girl. This is a responsibility that parents need to hold in mind, since children who "graze" are likely to have poorer nutritional intake than those who eat meals, perhaps because appetite (and the physiologic mechanisms that accompany it) is better developed in relation to meals that are spaced with the child's appetite and hunger in mind. In addition to reaffirming with the parents the responsibility of patterning regular meals for the child, the nurse also helps the parents identify criteria for adequate nutritional intake, including the child's weight gain.

Preliminary Findings

Empirical findings that would permit us to evaluate the effectiveness of guided participation in affecting the adequacy of the child's nutritional intake, growth, development, and physical health, are not yet available. The intervention may not have enough power to affect these outcomes in light of other forces, including biological, family, and community conditions. The intervention, however, may have an effect on the more proximal or immediate outcomes (Horsch, 1998), i.e., the mother's caregiving competencies and the problem solving of caregiving issues that mothers and family members do together. The nurses who work with mothers through guided participation report evidence of increased competence in describing and analyzing signs of change in infant health status, in communicating more effectively with family members and clinicians, and in taking more informed action concerning the child's nutritional needs and feeding behavior. As infants near the end of their first post-term year, some mothers demonstrate greater competency in organizing and implementing plans for their child's health care. Nurses have observed mothers in experiencing greater pleasure with their infants and greater commitment to learning what their child is communicating. We are also learning the importance of the social and political environment in how competently a mother may provide care to her VLBW infant. When supports are limited or the demands on a mother too taxing, a mother's caregiving may look less competent than it has been previously observed.

Next Steps

Guided participation to support competency development for caregiving practice that is well-suited to the special health needs of a VLBW child requires a family to have access to clinicians. The goal is for clinicians, through a continuing relationship, to become attuned and responsive to family caregiving goals and practices in light of complex health issues and goals (Barnard, 1997; Patterson & Blum, 1996). Neonatal intensive care unit nurses have opportunities to support the beginning relationship with an infant and caregiving competencies of family caregivers of a very low birth weight infant. Public health nurses have knowledge and skills needed for support of family competencies in caring for children with special needs and are ideally placed for a continuing relationship in community- and family-based settings. Since intervention requires readiness to make use of it, mothers may need mental health or social services to support readiness. Clinicians who provide services to the child must be well linked and informed about the child's needs, caregiving issues, and intervention goals. To date, these requirements have not been in place in a tested intervention (Holditch-Davis & Miles, 1997). The next phase of our study is to structure the guided participation in a public health-nursing-primary care partnership that has access to mental health and case coordination services.

We know too little about the needs for day-to-day and out of the usual care of children with special health needs. Much must be learned about how families develop and sustain caregiving competencies, including competencies in communicating and problem solving within the family and with clinicians. We believe that advancing knowledge in these areas is central to advancing family-centered care and the participation of families as partners in their child's care.


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* Supported by the US DHHS/PHS/HRSA Maternal and Child Health Bureau, Grant MCJ 550806; the March of Dimes, Grant FY96-0467; and the National Center for Research Resources, Grant M01 RR03186, to the University of Wisconsin Medical School.

Appreciation is expressed to the mothers who, with their infants and a family member, participated in this study, to Wanda Frazier, Lorna Cisler-Cahill, and Lisa Davis for their contribution of guided caregiving practice episodes to the presentation, to Donna Haack, who prepared the manuscript, and to Lester Dore and Michael Killips who prepared the visual materials for the presentation of this paper at the symposium on parents and the Health-Care System, April 19, 1998.

For more information, contact Karen F. Pridham, PhD, RN, at the University of Wisconsin Madison School of Nursing, 600 Highland Ave., Madison, WI 53792-2455, E-mail; telephone (608)263-5282; FAX (608) 263-5332.

Copyright © 1998 Karen Pridham, Rana Limbo, and Michele Schroeder.

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