Australian Occupational Therapy Journal (2006), 1–14 Feature Article 2006 Blackwell Melbourne, Australian AOT 0045-0766 2 53 Blackwell Publishing Occupational Australia Publishing AsiaTherapy Asia PtyJournal Ltd doi: 10.1111/j.1440-1630.2006.00577.x Home I. Feature NOVAK programmes: Article and A. CUSICK where to start? Home programmes in paediatric occupational therapy for children with cerebral palsy: Where to start? Iona Novak1 and Anne Cusick2 1Spastic Centre Australia and University of Western Sydney, and 2College of Science and Health, University of Western Sydney Australia, Penrith South DC, New South Wales, Australia Aim: Home programmes are used extensively for children with cerebral palsy. Even though there is consensus about the importance of home programme intervention, there is little evidence of efficacy and scant information regarding programme characteristics that might affect family participation. Instead, research to date has focussed on parental compliance with prescribed programmes and parent–child interactions. Methods: Based on reviewed literature, this article proposes a model to guide development of home programmes for children with cerebral palsy. It is a starting point for therapists to consider the way in which they focus and structure their home programmes for children who have cerebral palsy. Results and Conclusions: The paper identifies an urgent need to develop clinical guidelines for home programmes through rigorous formal processes and to evaluate the impact of occupational therapy home programmes. KEY WORDS cerebral palsy, family-centred practice, home programmes, parental participation. Introduction Occupational therapy intervention for children with disabilities focuses on improving the child’s functional performance and ability to interact with his or her physical and social environments (Case-Smith, 1996). Home programmes are used extensively as a strategy for achieving these desired outcomes (Hinojosa & Anderson, 1991). It is widely acknowledged that children with disabilities require opportunities for repeated practice at new tasks (Dormans & Pellegrino, Iona Novak BAppSc, MSc(Hons); Research Fellow; PhD student. Anne Cusick PhD; Professor. Correspondence: Anne Cusick, University of Western Sydney, Building 3, Campbelltown Campus, University of Western Sydney, Locked Bag 1797, Penrith South DC, New South Wales 1797, Australia. Email: a.cusick@uws.edu.au Accepted for publication 20 March 2006. © 2006 Australian Association of Occupational Therapists 1998), and clinical experts have long believed that home programmes are essential for achieving improved motor and functional performance (Bobath, 1967; Finnie, 1975). In addition, resource constraints, waiting lists and limited access to therapy services for some families have meant that home programmes have become an alternative to one-on-one service provision. Occupational therapy home programmes, like all therapy, need a conceptual base for effective focussed operation. Without a conceptual base to guide problem identification, goal and programme formation, and intervention and evaluation selection, therapists have little to help them in setting programme goals or parameters. Over the past 50 years, occupational therapy approaches to paediatric intervention have been increasingly framed by a broader service approach called family-centred practice (FCP). This approach shifts service focus in paediatric health care away from professionals determining children’s needs within institutional care settings, towards parents, being recognised as central and expert caregivers (Dunst, 1991; Winton & Bailey, 1997). This transformation recognises that families are better positioned than health professionals to direct, plan and prioritise their child’s health care (Winton & Bailey). FCP comfortably supports the increased use of home programmes — indeed they are now considered an essential technique for helping families achieve desired health outcomes for their children with disabilities. This is particularly the case for children with cerebral palsy (Shilton, Jeppson & Johnson, 1987; Viscardis, 1998; Winton & Bailey, 1997). FCP is now identified as the ‘gold standard’ in service for children with cerebral palsy (Bailey, Buysse, Edmmondson & Smith, 1992; Rosenbaum, King, Law, King & Evans, 1998) and is claimed to lead to better health outcomes (Rosenbaum et al.). In Australia in particular, FCP has been identified as an emerging and desirable approach for paediatric occupational therapy (Hanna & Rodger, 2002). This desirability is not only in terms of occupational therapy goals, but also because it supports legislated Australian service requirements and standards that 2 identify the importance of informed decision-making by people with disabilities and their families (New South Wales Government Department of Ageing, Disability and Homecare, 2004; New South Wales Government, 1993). FCP approaches recognise family expertise, and focus service efforts on enhancing caregiver competency so that the health and development of the child with cerebral palsy are appropriately managed within the context of daily life and meaningful family goals. Not only does FCP support and frame the use of home programmes, but in a practical way occupational therapy home programmes are integral to achieving FCP. They make real the promise of enhanced caregiver competency to support the health and development of the child with cerebral palsy. Home programmes are far more than ‘home visits’ (Wortis, Cooper & Simonson, 1954), ‘home treatment programmes’ (Tyler & Kahn, 1976) or therapy provided in a home setting (Stephenson & Wiles, 2000). They are interventions specifically designed for implementation in the home and in the context of daily life by families. In a familycentred service context, they are also directed and evaluated by families who have developed the necessary competencies through their interaction with therapists and other service providers and resources. FCP home programmes thus require very different therapy roles from those traditionally taken and these roles reflect shifts in parent–therapist relationships in recent years (Turnbull & Turnbull, 1990; Hinojosa, Sproat, Mankhetwit & Anderson, 2002). In FCP home programmes, therapists are expert partners working with parents to support their child’s development and health by enhancing caregiving competency (Washington & Schwartz, 1996). Therapists do not ‘direct’ programmes, and families do not ‘comply’, instead they participate in or implement programmes. Indeed it is families, not therapists who ultimately direct therapy and determine whether or not therapy has been successful, as family perceptions are important (King, Law, King & Rosenbaum, 1998). The FCP approach that underpins home programmes can therefore be challenging even for therapists accustomed to client-centred approaches. Not only do therapists need to select and apply their occupational therapy frame of reference to the needs of the child with cerebral palsy and their families, but they also need to do this in a framework that places the family in control. The central task is not to ‘treat the child’ but rather to ‘enhance caregiver competency’ through a range of strategies informed by the occupational therapy frame of reference. ‘Enhancing caregiver competency’ is a complex notion and one that needs further theoretical definition in the literature. Pragmatically, we have understood this to mean enabling families to make I. NOVAK AND A. CUSICK informed decisions regarding their child’s health and development by having appropriate knowledge, skills and resources to support their choices and actions. That means providing families with knowledge, skills and resources to identify problems in their daily routine that arise from the condition of cerebral palsy, to know either how to address these problems or how to get specialist support and resources to do so, to know how to determine if progress is being made in ways that families want, and to know how to set goals in ways that reflect family priorities and values. Occupational therapy home programmes operating within an FCP service framework, are not attempts to make parents into therapists (Rodgers, 1986). Occupational therapists still operate within their selected frames of reference and utilise their specialist skills: but the overarching service goal is to enhance caregiver competency not to ameliorate the presenting problems of the child by therapist hands-on intervention. Clearly, there are reasonable limits to this principle: issues of child protection and presenting problems endangering health and life must be dealt with as part of legislated responsibility for health workers. Most families, child conditions and daily contexts do not, however, present this level of risk. Occupational therapy home programmes therefore need to be sensitive to family direction, daily routine, resources, as well as the attributes of the child and the potential capacity of the family to enhance competency for caring. Occupational therapy home programmes need to be well designed, appropriately implemented and effectively evaluated. This is no easy task. Currently, there are no clinical guidelines to assist therapists using home programmes for children with cerebral palsy and little guidance for those therapists who want to implement home programmes from a family-centred practice approach. Therapists must therefore make individual decisions regarding occupational therapy frames of reference to use and then they must work out for themselves how these can be applied in over-arching family-centred service contexts. Development of clinical guidelines is an arduous and formal process (National Health and Medical Research Council, 1999) and as a profession we are some way off being able to do this for home programmes with children who have cerebral palsy. There is, however, a need to start somewhere and this article is a beginning in dialogue towards clinical guideline development. Aim This article presents findings from a literature search into occupational therapy home programmes for children with cerebral palsy, complemented by literature from family-centred practice and author experience to © 2006 Australian Association of Occupational Therapists 3 HOME PROGRAMMES: WHERE TO START? TABLE 1: Literature search strategy Inclusion criteria for articles: Databases searched: Relevance determined by: TABLE 2: • • • • • Research-based articles on home programmes for children with congenital special needs were sought, which included the following keywords, their derivatives and associated terms: Search 1: occupational therapy and home programmes Search 2: (and/or links for all) home programme; child/parent/family; disability/special needs; compliance/participation; effect/outcome/benefit/impact; occupational therapy and randomised controlled trial/controlled trial/clinical trial. Cochrane, DARE, PEDro, OT Seeker, CINAHL, Medline, PsycINFO, HealthSTAR, Complete Nursing Keywords in title, keywords (as above) list and the text of the article Available in English Pertained to therapy for life long disability not acute rehabilitation ‘home-health care’ The article described paediatric intervention not ‘family therapy’ The focus of the article was about home programmes not a clinical intervention technique Rules of evidence and grades of recommendation Level I: Large randomised trials with clear cut results (low risk of error) Level II: Small randomised trials with uncertain results (and moderate to high risk of type A or B error) Level III: Non-randomised, contemporaneous controls Level IV: Non-randomised, historical controls Level V: Case series (and opinion) explore possible features and phases of a ‘model’ occupational therapy home programme for children with cerebral palsy. In doing so, the article attempts to provide a practical review of the limited literature currently available in this field. This will enable therapists to consider the way in which they focus and structure their home programmes for children with cerebral palsy. It is not intended as a clinical guideline. We initially targeted occupational therapy home programme literature and then extended our search outside occupational therapy to determine: (i) what is known about the effectiveness of occupational therapy home programmes for children with disabilities and children with cerebral palsy in particular; (ii) what is known about optimal intensity for achieving desired outcomes from home programme intervention; and (iii) what programme characteristics are related to family participation in home programmes. Gaps in knowledge were identified and further information was sought from occupational therapy paediatric and family-centred literature. On the basis of the review, features and phases that may usefully be considered by occupational therapists engaging in home programmes for children with cerebral palsy are presented. Method A defined search protocol (Table 1) was used to locate references on occupational therapy home programmes for children (search 1). Articles were then used to © 2006 Australian Association of Occupational Therapists Grade A Grade B Grade C answer specific questions relating to home programme characteristics, intensity and efficacy. Literature was categorised using an evidence-based practice framework (Law, 2002) regarding strength of evidence (Table 2) (Sackett, 1986). Content was critically reviewed in relation to the review aims (Table 3). A further literature review (search 2) (Table 1) was conducted in fields outside occupational therapy to locate more information regarding parental participation in home programmes. Findings of the review were then synthesised into a ‘model programme’ which, in lieu of a clinical guideline, aims to provide a starting point for therapists considering occupational therapy home programmes for children with cerebral palsy. Results The research literature retrieved from the search is summarised in Table 3. A total of 28 articles were found (Table 4). Overall, this review found that there was little to assist occupational therapists to design, implement or evaluate home programmes from an evidence-based perspective for children with disabilities and children with cerebral palsy in particular. Occupational therapy literature on home programmes is primarily non-randomised or based on opinion, with no articles specifically evaluating the impact or effectiveness of home programme intervention. Despite the 4 TABLE 3: I. NOVAK AND A. CUSICK Summary of literature search results Objective of the search: Number of articles sourced 0 0 28 1. To determine what is known about the effectiveness of occupational therapy home programmes for children with disabilities. 2. To determine what is known about the optimal intensity for achieving desired outcomes from home programme intervention. 3. To determine what programme characteristics are related to family participation. Objective 1 results: There were no research articles sourced that specifically evaluated the effectiveness of home programme intervention. Objective 2 results: There were no research articles sourced that specifically evaluated the optimal intensity for achieving desired outcomes from home programme intervention. Objective 3 results: There were 21 grade B and grade C quantitative articles and seven qualitative research articles sourced reviewing family participation preferences and characteristics of home programmes, which families choose to implement. Refer to Table 4 for more information. overwhelming support and recognition of the importance of home programmes for children with a disability in literature (Schreiber, Effgen & Palisano, 1995), no studies evaluated their effectiveness in helping families achieve desired health outcomes. Several authors, did, however, identify a need for more home programme research (Hinojosa & Anderson, 1991; Molineux, 1993; Schreiber et al.). Occupational therapy research related to home programmes has, to date (Table 4), focused on topics such as parental ‘compliance’ with prescribed home programmes (Gajdosik, 1991; Gajdosik & Campbell, 1991; Law & King, 1993; Mayo, 1981; Molineux, 1993; Schreiber et al., 1995; Wortis et al., 1954) and qualitative analysis of the effect of home programmes on parent– child interactions and associated stressors (Hinojosa & Anderson, 1991; Hinojosa, Anderson & Strauch, 1988; Piggot, Paterson & Hocking, 2002; Thompson, 1998; Tyler & Kahn, 1976; Tyler & Kogan, 1977). Information relating to parental compliance, while helpful in traditional approaches to therapy, has less relevance to home programmes that derive from FCP approaches (Bazyk, 1989) as parental ‘participation’ rather than compliance, better describes parental roles. Information relating to parent–child interactions is also very helpful for informing therapists of parent perspectives, however on its own is not a guide for home programme design or implementation. Discussion Five findings emerged from the occupational therapy home programme literature review: first, that the level of evidence from occupational therapy home programme literature was of a low level; second, that the efficacy of occupational therapy home programmes has not been established; third, that there was little information to assist therapists determine programme intensity; fourth, that there was no guide for therapists to design home programmes that incorporated characteristics that facilitated family participation; and fifth, that the occupational therapy literature to date focussed on parent compliance with programmes and the experience of parents. While many questions remain unanswered in occupational therapy home programme literature for children with cerebral palsy, information was found that could help inform practice decisions of therapists who use home programmes for children with cerebral palsy. Just as legislated frameworks for service require informed decision-making by consumers, therapists themselves need to make informed decisions even when evidence-based clinical guidelines are not yet available. As Mason (2002) states, ‘you can’t practise until all the research is in. But you can examine the strongest evidence from current research to determine best practice’ (p. 7). The remainder of the article presents a model programme based on literature reviewed, that can be used by therapists as a stimulus for decision-making regarding the structure and features of home programmes for children with cerebral palsy and their families. It has not been developed as a clinical guideline, but rather as a starting point for informed reflection on practice. The model assumes that therapists work within a family-centred service approach because this is considered the ‘gold-standard’ for children with cerebral palsy. The model also assumes that therapists use explicit occupational therapy frames of reference that accommodate the ‘whole person’. The Canadian Model of Occupational Performance (McColl & Pranger, 1994) is one example that does this and provides a standardised means of outcome evaluation. It must be noted that any occupational therapy frame of reference is appropriate so long as it can accommodate all dimensions of the International Classification of © 2006 Australian Association of Occupational Therapists Authors Search results of family participation preferences and characteristics of home programmes families choose to implement Intervention Method Compliance with home programmes Gajdosik Effects of weekly review, (1991) socioeconomic status and maternal belief on mother’s compliance with their disabled children’s home exercise program 3 weeks physiotherapy home programme with weekly review for experimental group RCT, uncertain power Gajdosik (1991) Issues of parent compliance: what the clinician and researcher should know Physiotherapy home programmes Law & King (1993) Parent compliance with therapeutic interventions for children with cerebral palsy The effect of a home visit on parental compliance with a home program Daily occupational therapy home programme with 4 h cast wear Home programme + home visit for experimental group Mayo (1978) Patient compliance: Practical implications for physical therapists: A review of the literature Physiotherapy home programmes Molineux (1993) Improving home programme compliance of children with learning disabilities Occupational therapy home programme Mayo (1981) Title Level of evidence Sample no. and diagnosis B 18 childhood disability Key findings with results and analysis 5 a. Weekly review did not increase compliance (P = 0.086) b. Socioeconomic status, weekly review, and parents’ beliefs in their control of their children’s health did not predict compliance (NS) c. Socioeconomic status predicted therapist’s estimates of compliance with higher status higher compliance prediction (P = 0.024) Author C N/A a. Disposable treatment items or daily journal are viewpoint developmental the most accurate way to record compliance delay b. Simplifying the programme and close monitoring positively supports parents Data collected in C but collected 72 cerebral a. Compliance with home programmes was high a 2 × 2 factorial during a palsy 66% for 75% of the time design grade A trial b. Of the five compliance measures, only parental reporting predicted outcomes RCT, uncertain B 18 delayed a. Experimental group improved more than power development control group (P < 0.05) in motor development, and CP using independent t-test b. Provision of a home visit did not increase compliance (NS) c. Mothers of children with severe disability complied more than those with moderate disability (P < 0.01) Literature review C N/A Home programmes are a large part of child’s treatment programme, thus compliance is a key factor. Non-compliance ranges from 15–94% depending on the population studied and is a factor affecting outcome Author C N/A Compliance is a complex concept. Strategies viewpoint learning for developing home programmes include: difficulties understanding parent readiness; exploring the effect on parent–child relationship and using token economies to reward HOME PROGRAMMES: WHERE TO START? © 2006 Australian Association of Occupational Therapists TABLE 4: 6 TABLE 4: Continued Sample no. and diagnosis Author viewpoint C N/A 6 weeks of physiotherapy home programme RCT, uncertain power B 18 28 days of 6.5 h per day of occupational therapy home programme Occupational therapy home programme and home visit Single-case study C 1 cerebral palsy Interview and home visit C 24 cerebral palsy 4 months of psychology ‘TEACCH’ home programme for 30 min per day Controlled trial non-randomised C 22 autism N/A Author viewpoint C N/A Parents Title Intervention Method Robinson (1987) Patient compliance in occupational therapy home health programme: Sociocultural considerations Occupational therapy in the home Schreiber et al. (1995) Effectiveness of parental collaboration on compliance with a home programme Tyler & Kahn (1976) A home treatment program for the cerebral-palsied child Wortis et al. (1954) The home visit in a cerebral palsy treatment programme Training parents to become ‘therapists’ Ozonoff & Effectiveness of a home Cathcart programme intervention (1998) for young children with autism Rodgers (1986) Parents as therapists: A responsible alternative or abrogation of responsibility Key findings with results and analysis a. Professionals who are flexible, adaptable and have a breadth of knowledge promote compliance b. Pressured family life; tedious activities and activities with low perceived importance negatively affect compliance a. Parent–therapist collaboration on programme content did not lead to more compliance than ‘therapist prescribed’ home programmes (P = 0.70) b. Child’s age was not related to compliance (P = 0.18) c. High compliance in both groups may be attributed to family interest and log calendar a. Authors report more normal movement; better tolerance of stimulation; mealtimes were manageable; and improved vocabulary b. Parents reported that the programme could be fitted into their schedule Three reasons were identified why programme was not carried out at home: lack of understanding, difficulties in home situation, and emotional disturbances in parent–child relationship a. Children whose parents were trained in the TEACCH method improved significantly more than the control in imitation (P < 0.05), fine motor (P < 0.01), gross motor (P < 0.05), and cognitive (P < 0.01) skills measured on the Psychoeducational Profile-Revised subtests b. Mild autism and good language skills predicted outcomes (r = –0.62, P < 0.05) With support and guidance, parents can become effective change agents for their child, as parents can assume the role of paraprofessional I. NOVAK AND A. CUSICK © 2006 Australian Association of Occupational Therapists Level of evidence Authors Continued Authors Title Intervention Method Turnbull & Turnbull (1978) Parent involvement in the education of handicapped children: A critique N/A Author viewpoint Level of evidence Sample no. and diagnosis C N/A Parents It is recommend that the parent and therapist role remain separate because of the potential negative impact on the child’s self esteem of the parents becoming the child’s therapist and educator Therapist attitudes and practices regarding parent participation and home programmes have evolved. Guidelines for developing family centred home programmes include: parent as decision maker; parental role development; collaborative programmes; recognising family differences; providing options and considering the child’s need a. The model includes: promoting functional performance; identifying periods of change; identifying task and environment constraints; and encouraging practice b. Clinically important change occurred in gross motor; mobility and function Key strategies for implementing a FC approach: acknowledge grieving; let parents describe what they want; focus on positive aspects of child; put parents first; tell parents they are doing a good job; provide opportunities to meet other parents; and be sensitive to the loss of a dream of a perfect child Respondents believed that working with parents, more than any other aspect of intervention, had the greatest impact on the child’s progress Family-centred home programmes and intervention Bazyk Changes in attitudes and N/A (1989) beliefs regarding parent participation and home programs: An update Literature C synthesis and author viewpoint N/A children with disabilities Law et al. (1998) Family-centred functional therapy for children with cerebral palsy: An emerging practice model Family-centred functional therapy model Pilot prepost design C 12 cerebral palsy Viscardis (1998) The family-centred approach to providing services: A parent perspective Family-centred intervention Author viewpoint C N/A children with disabilities Hinojosa et al. (2002) Shifts in parent-therapist partnerships: 12 years of change Therapist’s attitudes towards parents Survey of OTs C 199 occupational therapists of clients with DD Occupational therapy in the home Author viewpoint C N/A children with disabilities Home environment and therapy Hinojosa Paediatric occupational et al. therapy in the home (1988) Key findings with results and analysis 7 Occupational therapy offered in the home setting offers more flexibility and solutions suited to the environment. The family and child are also more at ease HOME PROGRAMMES: WHERE TO START? © 2006 Australian Association of Occupational Therapists TABLE 4: 8 TABLE 4: Continued Sample no. and diagnosis Qualitative: interviews N/A Adults with hemiplegia Prepost design C 33 children with disabilities Prepost design C 18 cerebral palsy and DD Stressful and conflicting interactions were reduced between the parent and child. More change was seen in the parent than the child Author viewpoint and literature review C N/A children Measurement of change in response to occupational therapy must be relevant and meaningful to individual clients and families. Attaining individual goals measured through COPM and GAS may offer more sensitivity than standardised measures N/A 5 mothers of children with CP a. Two themes, ‘Is anybody listening?’ and ‘Not another one’, revealed the importance of listening and continuity of care b. Mothers described occupational therapists as skilled agents of change, effective in helping and a valuable sources of information and support Title Intervention Method Stephenson & Wiles (2000) Advantages and disadvantages of the home setting for therapy: Views of patients and therapists Occupational therapy in the home Stewart & NeyerlinBeale (2000) The impact of community paediatric occupational therapy on children with disabilities and their carers Occupational therapy in the home Parent–child relationship with home programmes Tyler & Reduction of stress between Parental training for Kogan mothers and their home programme (1977) handicapped children implementation Measurement of family-centred occupational therapy Wallen & Performance indicators in Measurement Doyle paediatrics: The role of of occupational (1996) standardised assessments therapy and goal setting Parental experience of occupational therapy and home programmes Case-Smith The effect of occupational Experience of Qualitative: & Nastro therapy intervention on occupational interview and (1993) mothers of cerebral palsy therapy ethnography Key findings with results and analysis Five themes were identified: convenience, therapeutic environment, social contact, control and grateful recipient. Therapists identified the home environment was more relevant for intervention and goal setting a. Children’s independence improved although many remained dependent for a number of daily living tasks b. Carers found the occupational therapy satisfactory but it did not reduce the strain of caring I. NOVAK AND A. CUSICK © 2006 Australian Association of Occupational Therapists Level of evidence Authors Continued Level of evidence Sample no. and diagnosis Experience of Qualitative: occupational therapy interview and and physiotherapy observations home programmes N/A 8 mothers of children with CP Mother’s perceptions of home treatment programs for their preschool children with cerebral palsy Experience of Qualitative: occupational therapy interview and physiotherapy home programmes N/A 8 mothers of children with CP Piggot et al. (2002) Participation in home therapy programs for children with cerebral palsy: A compelling challenge Experience of Qualitative: N/A occupational therapy grounded theory home programmes 4 therapists and 8 parents Thompson (1998) Early intervention services in daily family life: Mother’s perceptions of ‘ideal’ vs. ‘actual’ service provision Experience of Qualitative: occupational therapy questionnaires intervention and interview N/A 10 mothers of children with DD Experience of Qualitative: occupational therapy interviews and physiotherapy intervention N/A 2 parent– therapist dyads Authors Title Intervention Hinojosa (1990) How mothers of preschool children with cerebral palsy perceive occupational and physical therapists and their influence on family life Hinojosa & Anderson (1991) Washington Matennal perceptions of & Schwartz the effects of physical and (1996) occupational therapy services on caregiving competency Method Key findings with results and analysis 9 a. Mothers reported not having the time, energy or confidence to implement therapist-directed home programmes. Instead they adapted interventions to fit their lifestyles and routines. They made play therapeutic b. Therapists need to acknowledge that such adaptations are important c. All mothers seemed to believe more therapy is better a. All had previously used home programmes but none were currently b. Successful activities were: doable, could be integrated into routines, were enjoyable for the child and not stressful the family Two time-distinct phases described the parental journey of adjustment and participation. Initially, parents were adjusting to the diagnosis, and this precluded their full involvement. Then they entered a phase of high participation, striving to maximise outcomes a. Parents used EI to enhance their child’s abilities; what was best for their family was a lesser priority b. Relaxed and friendly providers were perceived as having a greater insight into daily family life, and therefore a greater capacity to meet needs c. Parents did not experience many ‘ideal’ characteristics of services and providers, suggesting that changes are needed in occupational therapy a. Increased perception of parental competency is an outcome of therapy b. Mothers view therapists as a: friend, advocate, mentor, troubleshooter, source of information and source of support c. Effective communication in parent–therapist relationship is essential HOME PROGRAMMES: WHERE TO START? © 2006 Australian Association of Occupational Therapists TABLE 4: 10 FIGURE 1: I. NOVAK AND A. CUSICK Model home programme approach Functioning Disability and Health (ICF) (World Health Organization, 2001). This is because the problems and priorities of the family may range from structural concerns to activity participation and community engagement and therapists need to be able to respond to these issues as required. Once an occupational therapy frame of reference is selected as a standpoint for framing the technical expertise of the therapist, the occupational therapist and family can engage in the home programme process. The model programme suggests five phases of action: these are not definitive and they do not prescribe particular strategies, but rather they serve to remind therapists of the type of tasks and concerns that need to be addressed in home programmes as they develop. The five phases are: (i) establishing a collaborative relationship with the child’s parent/caregiver; (ii) collaborative goal setting; (iii) constructing the home programme; (iv) supporting the programme implementation; and (v) evaluating the outcomes. The model phases are summarised in Fig. 1. Phase one focuses on establishing a collaborative relationship with the child’s parent. This is essential in a family-centred approach because the family, not just the child, becomes the focal point. The family needs to become active partners in providing health care for their child, and this is new to some because it moves away from former child-centred approaches where professionals tell parents what to do (Hanna & Rodger, 2002). To work as partners, therapists must recognise the expertise of parents (National Centre for Family-Centred Care, 1990). Achieving a sense of collaboration is the focus of the first phase as it is this quality that is considered to be influential in whether or not families engage in home programmes (Hinojosa, 1990). Collaborative relationships are influenced by a number of factors including: (i) therapist interpersonal skills (Laadt-Bruno, Lilley & Westby, 1993; Robinson, 1987; Thompson, 1998); (ii) therapist attitudes towards a family-centred approach that values parent roles, expertise and decisions about what is best for their child and their preferred level of programme involvement (Bazyk, 1989; Hanna & Rodger, 2002; Molineux, 1993; Viscardis, 1998;); and (iii) therapist clarity on roles within the home programme, particularly in relation to parents, rather than the therapist, being able to determine what is best for the child. This involves a role-shift by therapists to that of ‘technical experts’ (Rosenbaum et al., 1998). The latter role is to encourage and enhance caregiving competency (Bazyk, Viscardis). The aim of phase two is to establish mutually agreed goals. In this phase of the home programme, it is the therapist’s responsibility to encourage, ‘parental decision-making based upon appropriately presented information, in the context of clearly defined child and family needs, and built upon child and family strengths’ (Rosenbaum et al., 1998; p. 5). This means that therapists may need to use strategies to enhance the capacity of parents to be able to identify problems, priorities and issues that influence goals. Parents need knowledge and skills that are relevant to setting goals, and from an occupational therapy point of view, the process of devising and implementing assessment is a good starting point of collaboration. There needs to be sharing of parent and therapist perspectives on areas that can and should be assessed, why this is important and what findings mean (Crais, 1993). Collaborative assessment focusses on goal areas identified by the parent as important and provides technical information to the parent about why particular components, tasks or goals are difficult for the child to currently achieve. Occupational therapists need to be able to explain their approach so that parents have an understanding of the scope of practice expertise offered. Assessments performed and used collaboratively not only facilitate a deeper understanding of issues by parents, but also tend to lead to more realistic goals and solutions (Anderson & Schoelkopf, 1996; Moersch, 1985; Shilton et al., 1987). Following assessment, parent needs and priorities regarding interaction with, and care of, their child are explored (Bazyk, 1989). This provides the starting point for goal formulation. Families typically © 2006 Australian Association of Occupational Therapists HOME PROGRAMMES: WHERE TO START? generate goals with an emphasis on managing the disability and its effect on everyday life (Coles, 2001). This is different to the traditional occupational therapy approach, where home programme goals were developed from a ‘deficit’ model by therapists, where delayed, deficient or missing aspects of the child’s performance were identified in order to pinpoint areas for intervention (Case-Smith, 1996). Although this technique may still be used in collaborative assessment where it is appropriate (Bleck, 1987), it is not the starting point for collaborative goal setting in the family-centred approach. Collaborative goal-setting, rather than focussing on deficit, focusses on assets/ competency already available in the family and priorities, needs and issues of concern to the families future daily life with a child who has cerebral palsy. A useful technique to identify goal areas is the ‘miracle question’ (Berg, 1994; Berg & DeJong, 1998; Coles, 2001) that basically asks families to consider what would have changed if all the problems and concerns they had identified were solved. This technique not only identifies areas for potential change (priorities, needs and issues), but also the approaches already used by the family to move towards desired changes (assets and competencies). Goals should be formulated in language meaningful to the family (which may also include technical terms if the family collaboration in assessment and interaction with the therapist has developed this knowledge) and if the family wants, goals can be prioritised. They should be clearly described and have timelines and observable outcomes that may even have different levels of attainment indicated if the outcome is uncertain. It is families that ultimately make the decision about the goals, priorities and desired outcomes as parents should be the primary decision-makers. The third phase of the model is selection of home programme therapeutic activities to be utilised. These are the range of supports, tasks and activities that are indicated by the combination of family goals, context, capacity, preference and the technical expertise and frame of reference of the occupational therapist. Selection of the therapeutic activities is collaborative. Collaboration is essential. One study that was reviewed, found that the main reason therapist-prescribed home programmes are not carried out was because mothers identified that they had competing responsibilities and child preferences (Hinojosa, 1990). This study also revealed that mothers value intervention, but develop their own ‘intervention programme’ by incorporating therapeutic activities into their mothering style (Hinojosa). Therapeutic intervention should be embedded within everyday tasks, to ease caregiving strain and to ensure the intervention seeks to increase the child’s function (Anderson & Schoelkopf, 1996; Moersch, 1985). This type of approach to therapy provision has been © 2006 Australian Association of Occupational Therapists 11 described as family-centred functional approach to therapy (Law et al., 1998). In early education fields this has been described as a naturalistic intervention strategy of ‘embedding’ (Pretti-Frontczak & Bricker, 2001). Typically, successful home programme activities were pleasing for the parent, and not stressful for the child or family (Hinojosa & Anderson, 1991). The programme may range from the use of adaptive equipment or the daily application of splints fabricated by the therapist on the parent’s request to prevent structural deformity, through to specific ways to participate in daily family routines like meal times. The therapist role is ‘technical expert’: therapists need to be able to explain to families how and why particular activities will help a child achieve a goal (Bazyk, 1989). The agreed programme needs to be documented for families as parents are more likely to engage in therapeutic activities if they are explained and written down (Molineaux, 1993; Rapoff & Christophersen, 1982; Simon, 1988). The selection of documentation format is important. Parents prefer programmes that are presented in written and pictorial format (Case-Smith & Nastro, 1993), for example a written programme with photographs can act as a daily reminder (Schreiber et al., 1995). To enhance caregiver competency for programme implementation, parents may need training to be confident in performing activities in the intended therapeutic way (Molineaux; Rapoff & Christophersen; Simon). Training should match the learning style of families (Bazyk). Demonstration of one technique at a time has been found to be helpful (Hinojosa & Anderson). Training is successful if parents feel capable, competent, and comfortable with using the therapy technique without feeling overwhelmed (Gajdosik & Campbell, 1991). The fourth phase of the programme is to implement the programme at home. Therapists need to actively support this to ensure the programme ‘on paper’ is practically feasible and is meeting the family’s needs. Families should be able to contact the therapist for support as they see fit (Bazyk, 1989): usually by phone, and if needed with follow-up face to face contact. Regular therapist contact with the family is helpful as families can learn about caregiving by watching the therapist interact with the child (Hinojosa & Anderson, 1991) and by seeking reassurance and feedback (Thompson, 1998). Therapists may consider themselves as ‘consultants’ or a ‘resource’ to the family (Bazyk; Dunst, 1991). In addition to assistance seeking, the following therapist implemented ‘support’ strategies help support home programme implementation (Gajdosik, 1991): • frequent contact with the parent to review the programme; • instruction on how to identify improvements; 12 • watching the parent perform therapeutic activities and providing feedback; • identifying and relaying the child’s improvements to the parent; • positive reinforcement of the parent, to build their confidence; and • communicating interest and concern for the family. The final phase focuses on evaluating home programme outcomes. Programme impact needs to be evaluated to determine whether or not family goals are being met. Evaluation should be ongoing and it should take a family point of view (Naar-King, Siegal, Smyth & Simpson, 2000), including eliciting family perspectives and observations on goal attainment. Ideally, standardised instruments or formal individualised measures (Wallen & Doyle, 1996) should be part of the evaluation repertoire, so that families and therapists share expertise regarding progress in a way that can further build caregiver competency. The model programme has been piloted in a 6month study with 20 children (4 girls; 16 boys; age range: 2–7 years; mean age: 3.8 years, all GMFCS level 1) who had spastic hemiplegic cerebral palsy (Novak, Cusick & Lowe, 2006). The phases and features of the model program described in this article were followed, individualised home programmes were developed (which included for example splinting, casting, motor learning), and impact was measured using a range of standardised instruments, some of which included family-formulated goals. This pilot revealed that the home programme had a positive impact and there was a significant difference prepost on all measures. The pilot did, however, have limitations, which meant that the model should be considered primarily as a starting point for therapist reflection on home programme issues, rather than a template to follow. For example, there was no control group, maturation factors were not accounted for, home programmes were highly individualised and so the suite of interventions, although similar, was not the same. Furthermore, the actual attributes of the home programme process were not evaluated: for example, the extent to which parents felt they really did collaborate in the assessment and goal setting phases, the strategies chosen by the therapist was discretionary and relied on their particular occupational therapy frame of reference. Despite these limitations, the pilot did indicate that the model was practical, potentially helpful to therapists implementing home programmes and worthy of further investigation. Conclusion Home programmes are widely used by occupational therapists who work with children who have disabilities I. NOVAK AND A. CUSICK and children with cerebral palsy in particular. Currently, there are no clinical guidelines to inform therapist decisions in relation to home program development, implementation or evaluation. In addition, there is a lack of evidence to inform therapists about home programme efficacy, appropriate intensity, or programme characteristics that enhance parent participation. In lieu of clinical guidelines, a model programme has been presented which uses findings from literature to identify possible phases and features that should be considered in occupational therapy home programmes. The model provides a starting point for therapists to consider the tasks and strategies that may be used to develop, implement and evaluate occupational therapy home programmes within the context of family-centred service approaches. 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