COMPLETED RESEARCH

Early intervention

Early Intervention Services and Parents with Disabilities (1999)

Early Intervention Services in Daily Family Life

Some Issues in Co-operative Team Work (1987)


Early Intervention Services and Parents with Disabilities (1999)

Llewellyn, G., Thompson, K. & Proctor, A. (1999) Early intervention services and parents with disabilities. International Journal of Practical Approaches to Disability, 23(1), 3 - 8.

Background

Early intervention services are typically provided for children with disabilities/developmental delay. When the parents of these children also have a disability, particularly an intellectual disability or a mental illness, service provision may become problematic. Just what role can and do early intervention services play? Although family-centred guidelines, best practice manuals and training programs are becoming commonplace in an effort to ensure workers implement family-centred practices, parents with disabilities have received little attention in these initiatives.

Aim

This study attempted to redress this lack of attention to parents with disabilities in early intervention initiatives. Its aim was to identify early intervention personnel in New South Wales who were working with parents with disabilities and to explore whether the services they provided to these parents differed in significant ways to those provided to non-disabled parents.

Method

A qualitative telephone survey was conducted with 90 early intervention services in NSW. The first question was designed to identify those services that had worked with parents with a disability. For those that had, the first issue discussed was whether or not their service worked differently with these parents. Following this, the ways in which the services differed were identified. A final section provided the opportunity for open-ended comments.

Findings and implications

45 services (50%) reported having had no contact during the previous year with parents with disabilities. Of the remaining services, parental intellectual disability and parental mental illness were by far the most frequently encountered. The following results pertain to workers' experiences with these parents.

Respondents reported significant differences in the way they worked with parents with disabilities compared with other parents:

  • More time was needed to prepare for, work with and follow up parents with disabilities.
  • Different methods of service delivery were employed, for example, in its location (the parent's home), the amount of support given and the style (format and content) of intervention.
  • Workers needed to coordinate and collaborate with other agencies to a greater extent.
  • Higher parent-staff ratios were employed; the more experienced staff were allocated to work with these parents and/or service directors were more involved at a supervisory and a practical level.
  • Additional/different resources were bought, modified or developed to adequately support parents with disabilities eg., pictorial information, videos.

An outcome of these differences and the complex issues that arise in working with parents with disabilities were seen to have practical and emotional consequences for early intervention workers. At a practical level, additional support (time, resources, and worker experience) and additional service documentation were required. At an emotional level staff needed time to debrief, thus helping to alleviate some of the frustration workers reported when faced with inadequate staffing and resources.

Overall, the role and function of the early intervention worker is considerably expanded when working with parents with disabilities. Further, several issues present when considering the most effective early intervention practice:

1. Early intervention services are in an ambiguous position in terms of providing the ongoing support usually required by parents with disabilities as their children move on to school. Given that they do not receive a referral until the second or third year of a child's life, and that their funding criteria limits them to providing support to children under 6 years of age, staff and families may be thus be faced with a difficult handover period only a year or two into the relationship.
2. The difficulties involved in acting as a preventative rather than crisis-oriented service.
3. Ensuring that the needs of the child, parents and the whole family are met presents a challenge to early intervention workers. Overall the respondents in this study felt troubled by not having enough time to assist and empower parents on the one hand and on the other to serve their children. This dilemma appeared to be a source of considerable stress.
4. Given resource constraints and the slower progress made with parents with disabilities, intervention goals may need to be fewer, less complex, and more focused on the parent.
5. The need for staff training and guidelines on how to best work with families where there is a parent with a disability.
6. In being primarily a 'child related' service, workers' knowledge of 'adult-related' services was not sufficient to adequately meet parent needs.

The findings from this exploratory study suggest several implications for early intervention policy and practice:

1. There is significant strain for early intervention staff working with parents with disabilities, particularly where they consider themselves to lack expert skills and knowledge about how to work effectively with these parents. It is therefore critical that these workers have access to training and support. Recommended practice and early intervention training programs must be expanded to include information and skills training specific to the support needs of parents with disabilities.
2. The second policy implication is the potentially important role for early intervention services in identifying parents whose children may be at risk of developmental delay. Currently it is unlikely that referral to an early intervention service will occur before the child is identified as having a developmental delay. Provision of structures whereby early intervention services consult routinely with mainstream child agencies about families where children are potentially at risk of delay could increase preventive support to parent and child and help avoid delayed or late referrals.
3. Finally, the findings from this study draw attention to the often-complex support needs of families where both parents and children have a disability. Complex issues require concentrated attention from many sources. It is highly unlikely that any one agency or service will be able to offer the perfect solution to supporting parents with disabilities and their children. There is an urgent need for policy makers to address the practical time and staff resource issues raised in this study. A first step would be the development of a cross agency committee to explore how the support needs of this particular group of parents with disabilities and their children can best be met.


Early Intervention Services in Daily Family Life: Mothers' Perceptions of "Ideal" Versus "Actual" Service Provision (1998)

Thompson, K. (1998). Early intervention services in daily family life: Mothers' perceptions of "ideal" versus "actual' service provision. Occupational Therapy International, 5(3), 206 - 221.

Background

In Australia, policy and practice are directed towards a community-based model of care that encourages families to care for their relatives with disabilities in the home. However, when a young child has a disability and high support needs, caregivers, usually mothers, also become involved in specialist services to help their child. Occupational therapy is one of the specialist services that comprise what is known as early intervention.

The focus of occupational therapy services has shifted from a traditional child-centred approach - where therapy focuses on bringing about changes in the child as distinct from the family - to a more family centred one. Here it is assumed that supporting families in their caregiving role promotes the functional development of the child.

Adopting such a model of care requires specific competencies, including skills related to developing an understanding of individual family situations and communicating this understanding to parents. Further, extensive guidelines exist for occupational therapy practice with families. These pertain to supporting parents practically and emotionally in their role as caregivers of a child with a disability. Supportive services are characterized by a collaborative relationship between therapists and parents who, as equal partners, identify the family's needs and resources and work together in developing a service structure and home program routine that fits into daily family life.

Although the occupational therapy and early intervention literature expouses a family-centred approach to intervention, families have rarely been asked about their experiences of these services. Whether the experience of parents caring for a child with a disability and high support needs matches this theoretical approach requires exploration.

Aim

This study aimed to identify and explore parents' perceptions of occupational therapy services and the impact of these services in their daily family life.

Method

A qualitative, ethnographic approach using semi-structured, in-depth interviews and demographic questionnaires was used to explore the parents' perspective. Five basic areas provided an outline for addressing parents' perceptions: the focus of the service; the fit of services into family routines; the values and attitudes of the therapists working with families; the coordination between services and different occupational therapists; and parents' descriptions of occupational therapy. Ten mothers of children 0 - 6 years were involved in the study. All interviews were taped and transcribed, and a constant comparative analysis conducted to identify similarities and differences in the data.

Findings and recommendations

Mothers described their experiences of caring for a child with a disability and high support needs, and their use of early intervention occupational therapy services as follows:

1. Mothers' Own Feelings and Actions
* Often evaluated their efforts by comparing these with their child's progress and development eg., when their child was progressing well, mothers perceived their efforts in accessing and participating in early intervention services as worthwhile and consistent with the needs of the child.
* In need of constant reassurance and feedback from service providers about their child.
* Compared their efforts with those of other mothers.
* Involved in an ongoing cyclical process of seeking, waiting, participating in, adjusting to and analysing the early intervention services their child received.
* Experienced anxiety, anger and frustration at the vast shortage of service providers and the consequent long wait for services and associated delay in the progress and development of their child.
* Made substantial efforts to accommodate and monitor early intervention services.
* Forgoes opportunities such as employment in order to pursue services for their child.
2. Perceptions In Relation To Their Children
* Wanted their children to have good health and to develop further.
* Measured their child's development in terms of functional goals such as 'communicating' and 'walking'.
* Made ongoing comparisons between their children to the development of other children both with and without disabilities, and to their child's own previous level of development.
* The development of their child was seen to be intrinsically linked to their efforts as the primary caregivers, to the amount of contact time that the child had with therapists, and to the different early intervention service providers working together on common goals.
3. Family-Focused Actions and Concerns
* Have to continually balance the demands placed on them by their home, their family and the early intervention services their child received.
* Need to consider both home programs and direct-contact therapy sessions so as to balance competing demands.
* The incompatibility of family and therapist routines often thwarted attempts to incorporate early intervention services into daily family life.
* Identified significant impact on siblings in terms of feelings of jealousy and increased responsibilities being assigned to siblings. Those services that used a family-oriented approach, and thus fostered sibling participation and a sense of inclusion, were perceived as having the potential to strengthen family relationships.
* Family participation in early intervention services was influenced by both personal and practical factors eg., the availability of childcare, the attitude of service providers towards siblings and parental involvement, the employment situation of caregivers, the friendliness of therapists, and transport difficulties.
4. The Place of Services
* Therapists ideally played out several roles in the course of their service provision: as a teacher of therapy techniques to both caregivers and children; as a referral source to other information and support services; as a support person insofar as providing reassurance and guidance by sharing information about other children with disabilities and their families, as well as by being genuinely friendly and interested in how the whole family was going.
* Early intervention services played a significant part in the lives of families with children with high support needs. They also added considerable pressure to families already straining under the pressure of busy family routines. Apart from the need to adjust routines, and to overcome transport and childcare difficulties, mothers noted significant financial costs associated with accessing early intervention services. In particular, the cost of transport to services, childcare for siblings, and loss of income was considerable. Additionally, several mothers described accessing costly private intervention services while on the waiting list for public early intervention services.

The findings of this study in relation to what mothers want from early intervention service providers are consistent with research concerning generic support services. Appeals for therapists to provide information; to develop open, trusting communications with caregivers; and to advocate for child and family needs were repeatedly emphasized.

In this study however, almost all occupational therapy services received were regarded by mothers as being focused on their child with high support needs. This contradicts the view expressed by the mothers that the personal support provided to them by therapists was as important as 'hands-on' intervention with their child. Interestingly, the professional literature falls far short of similarly acknowledging the value of personal support provided to caregivers by therapists.

Moreover, mothers in this study were compelled to adjust their personal and family routines in order to obtain, maintain and monitor early intervention services. This was because many of the ideal characteristics of services and service providers that mothers noted were not experienced in reality. Service providers did not adequately involve families in the development or implementation of therapy services. Notably, 90% of mothers were not involved in the development of an Individualised Family Service Plan (IFSP), a key method of helping service providers consider the needs, resources, concerns and strengths of families, and thereby a means to reduce the need for family adjustments to utilize early intervention services.

Of course, more than IFSPs or similar plans, the attitudes and values of the therapists were more likely to determine family involvement. For example, when therapists considered the occupational role balance of the family (in addition to that of the child), and were friendly and sensitive to family needs and priorities, services were structured to meet the personal (eg., emotional support) and practical needs (eg., home visits, sibling involvement) of individual families.

Constraints impinging upon this process, as identified by mothers in this study, included personnel shortages and time restrictions. However, based on current literature it is feasible to suggest that many therapists, particularly those with less experience or education, do not have the skills required to work with families. Continuing education or in-service training on working effectively with families needs to be provided for early intervention service workers.

Although the aim of this study was to specifically investigate occupational therapy services, mothers had difficulty differentiating these from other early intervention service providers. When it is the child who is primarily being assisted, coupled with the sheer number of different service providers working with these families, it may be difficult to determine 'who is who'. This suggests a need for a more transdisciplinary approach, and perhaps for occupational therapists to look more closely as to how their role is being defined.

Conclusion

Mothers in this study clearly described ideal characteristics of services and service providers. These descriptions have significant implications for, and present a challenge to, occupational therapy practice, education and research. To be truly family-centred therapists, we need to reflect on and re-orient to the expressed needs of families. We need to work with other professions and with families on common functional goals. We need to provide relaxed, friendly support to family members as individuals, not exclusively in relation to the child with a disability. We need to foster family involvement in services, with particular emphasis on sibling participation. To do so, we need to develop the skills and knowledge required to work with families. Occupational therapists need to be educated in family-related expertise in addition to the child-related skills that dominate undergraduate studies in paediatrics. As researchers, we need to further investigate the needs of families and the best ways of meeting these needs. First and foremost, developments in all areas of family-centred occupational therapy practice, education and research will require us to listen to families. To do less would negate our fundamental concern as occupational therapists - to support the health and wellbeing of the clients we serve.


Early Intervention: Some Issues in Co-operative Team Work (1987)

Maple, G. (1987). Early intervention: Some issues in co-operative team work. Australian Occupational Therapy Journal, 34(4), 145 - 151.

Working in teams is the currently acceptable way of providing early intervention services for children and families with special needs. In the most recent approach, the transdisciplinary team, professional participation cuts across traditional discipline boundaries. All members contribute to an individualized plan for the child, with one or two team members being designated as primary agents for intervention.

There appears to be an underlying assumption that team members will work together in a co-ordinated, co-operative and goal-directed fashion. There are times however, when this seems unrealistic, unreasonable or just plain impossible to achieve. Potential sources of disruption to team work stem from the following areas:

1. Team Functioning
* Early intervention teams are composed of professionals operating from different and potentially conflicting frames of references, usually from a medical, psychological, social or educational orientation. In addition, there is the family's frame of reference to consider
* The roles individuals play or want to play within the team may be at odds with the agenda held by their respective bureaucratically prescribed functions
* Team maintenance goals are often not clearly recognized or discussed by the team, and individual members will accord these goals differing priorities
2. Team Purpose
* Competing goals may be at work: goals for the children and family, individual professional goals, and goals of the service delivery agency
* Team members may also generally agree about the direction in which they wish to move with a particular child but have serious differences of opinion about the ways used to get there
3. The Team as Individuals
* No early intervention team will be homogenous; they will always consist of individuals with a variety of personalities and styles, and from a range of professional and non-professional backgrounds
* The expectations one has of their profession and how this will translate into support for the family may encroach on or be in conflict with the expectations of other members
* Lacking a clear understanding of the skills and responsibilities of team colleagues may be a source of confusion or frustration
* Each team member's perception of themselves and their position within the team will affect how they behave and their understanding of the position and perception of others on the team
* Sometimes people occupy positions because of their personality and characteristics and often, roles are taken up and reinforced by how these individuals are seen by others
* Attempts may be made by individual members to cover up or minimize the importance of any gaps in knowledge they may have
4. The Family as Team Members
* The concept of team must be broadened to incorporate the children and families they are aiming to assist. Whilst there is growing advocacy for parent to be included not just as information givers and service receivers but as equal and contributing team members, what form this 'contribution' takes may be contentious

Establishing and managing relationships between individuals is obviously a critical component of team work, and it would seem only sensible to allow time to develop procedures to minimize inevitable conflicts and prevent serious disruption to the efficiency and effectiveness of the team. Based on the work of Payne the following questions provide the basis for each team member to assess or re-assess their position in the team and for the team to review the effectiveness of its functioning:

  • Who communicates most with members and how?
  • Who has power and in what way?
  • Who likes whom and what are the effects?
  • How do team member's roles affect each other?
  • How does work flow between members?
  • What are people's status in relation to others, and on what basis is it?

Another way in which the functioning of the team could be reviewed is to look at a different series of questions that are primarily concerned with 'the person':

  • What does each person bring to the team/to their position as an individual? As an individual with a particular background?
  • What does each member expect to contribute to the team/to their position as an individual? As an individual with a particular background?
  • What does each member expect to gain from the team/from their position as an individual? As an individual with a particular background?

Finally, parents need to be offered a variety of options so that they can determine their level of involvement appropriate to their own and their family's needs. Parent wishes, abilities and available time are all factors which need to be taken into account. This type of flexible arrangement would form a basis for effective and comfortable sharing within the team in which all members are a part of the group.

Given the generally widespread acceptance of the concept of teams in early intervention services it seems imperative to raise issues in teamwork. In this manner people may move towards discovering ways in which teams may work to provide better integrated, co-operative and shared services to children and families with special needs.

Maple, G. (1987) Early intervention: Some issues in co-operative team work Australian Occupational Therapy Journal, 34(4), 145 - 151.

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