Australian Occupational Therapy Journal (2014) 61, 67–75
doi: 10.1111/1440-1630.12059
Research Article
Early intervention services of children with physical disabilities: Complexity of child and family needs Jenny Ziviani,1,2 Yvonne Darlington,3 Rachel Feeney,2 Sylvia Rodger2 and Pauline Watter2 1
Children’s Allied Health Research, Queensland Health, 2School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Queensland, Australia, and 3School of Social Work and Human Services, The University of Queensland, Brisbane, Queensland, Australia
Background/aim: To gain insight into the special issues confronting parents when accessing early intervention for children with physical disabilities where child and/or family characteristics indicate complex needs within the unique Australian context. Methods: Qualitative interviews with families receiving early intervention for their children with physical disabilities (N = 10). Families with complex circumstances such as having children with high support needs, those from culturally and linguistically diverse backgrounds, and single-parent families were recruited to the study. Families where parents had mental or health issues, parents/other family members had an identified disability, and/or where families lived in regional or rural locations were also purposively sampled. Results: Participants highlighted issues around (i) the nature of early intervention services provided; (ii) the ways in which services were structured; and (ii) managing their child’s needs/planning into the future. Parents stressed the importance of having access to a variety of early intervention services aside from therapy. They also emphasised the need for greater clarity about what to expect from services, the intensity of therapy, other services they could access and how long they would be able to receive these. Conclusions: Despite their complex circumstances and needs, participants’ experiences of accessing early interJenny Ziviani PhD, MEd, BA, BAppSc (OT); Conjoint Professor. Yvonne Darlington PhD, MEdSt, BOccThy; Professor. Rachel Feeney MPhty, BPhty; Senior Lecturer. Sylvia Rodger PhD, PGDipAdvSWPractice, BA, BSocWk; Senior Lecturer. Pauline Watter BSpPath, CertTESOL; Research Officer. Correspondence: Jenny Ziviani, The University of Queensland, Level 3 Foundation Building Royal Children’s Hospital, Herston Road, Herston, Brisbane, Qld 4006, Australia. Email: [email protected] Accepted for publication 4 May 2013. © 2013 Occupational Therapy Australia
vention services were largely consistent with the broader research literature. Of the parents interviewed, those with health problems and single mothers expressed most apprehension about managing their child’s needs and planning for the future. KEY WORDS early intervention, family-centred practice, qualitative research, disability.
Introduction Early intervention (EI) for children with physical disabilities can enhance child developmental outcomes, improve parents’ ability to care for their children in the context of their own needs and increase family quality of life. In delivering EI, providers should consider the unique developmental challenges and strengths of children and circumstances of their families if they are to operate in a manner consistent with family-centred practice (FCP) (Tomasello, Manning & Dulmus, 2010). It is important to appreciate the potentially unique experiences of children with disabilities where their families also face challenging circumstances because of the growing prevalence of this group amongst those accessing EI (Nolan, Young, Herbert & Wilding, 2005). Furthermore, the addition of family complexities can pose risks for children’s health and development (Johnson & Theberge, 2007). Complex needs may stem from characteristics of children (e.g. severe level of disability, significant medical issues) or their parents/family (e.g. culturally and linguistically diverse groups, single parents, low-income and rural families). Hebbeler, Spiker, Mallik, Scarborough and Simeonsson (2003) found a significant proportion of children receiving EI come from culturally and linguistically diverse (CALD) backgrounds, single-parent or foster care households and/or have other family members with special needs. Children and families’ complex circumstances tend to co-occur with an average of two risk factors per family (Hebbeler et al.). Previous studies regarding families with complex needs receiving EI primarily centre on the United
68 States (US), with relatively less research having been undertaken in Australia. Hence, our discussion of existing literature largely draws upon findings from the US. While service underutilisation has been reported amongst low-income (Unger, Jones & Park, 2001), rural (Stewart, 2012) CALD (Balcazar, Suarez-Balcazar, Taylor-Ritzler, Keys & Race, 2009) and Australian indigenous families (DiGiacomo et al., 2013), provider and programme characteristics may be better determinants of service use (Kochanek & Buka, 1998). Garcia, Mendez-Perez and Ortiz (2000) interviewed Mexican American mothers of children with language disabilities and found sociocultural background influenced their perceptions of typical childhood development. Often, mothers’ belief that their child would ‘catch up’ with age resulted in a disinclination to perceive their child had a disability or to seek and implement therapeutic interventions. Unger and colleagues reported that amongst lowincome single caregivers, engagement in EI was related to understanding of childhood development/behaviour, family functioning and moderated by stress and the nature of programmes accessed. Previous research has examined service needs of families with complex needs. Bailey et al. (1999) observed that while Mexican and Puerto Rican parents of children with developmental disabilities reported a comparatively greater number and range of service needs, types of needs were consistent with those reported by other families. Similarly, Darling and Gallagher (2004) found that African Americans (AA) and European Americans (EA) differed considerably concerning family needs, whereas urban and rural dwelling caregivers diverged regarding the level of support received. Rural, low-income families of children with disabilities have identified three chief concerns: (i) parenting and accessing toys/materials for their child; (ii) addressing their child’s health needs; and (iii) family issues (Ridgley & Hallam, 2006). Findings around travel costs for rural families were echoed by Stewart (2012), who found that these families travel to EI more often than urban families and associated expenses constitute barriers to service access. While families with complex needs differ from other families regarding service needs, researchers have warned against assuming all families with particular characteristics have similar needs and perceptions of EI, especially considering the importance of programme characteristics in shaping parents’ experiences. Given existing gaps in the literature, we sought to gain understanding of experiences of Australian families with complex needs receiving EI. Australia has a unique sociodemographic profile, population distribution, and health, welfare and disability service systems, which may result in findings varying from those reported in other countries. Primarily we aimed to identify issues (facilitators/barriers) families encounter accessing EI services for their child with physical disabilities, and what insights into service provision could be gained. © 2013 Occupational Therapy Australia
J. ZIVIANI ET AL.
Purposive sampling was employed to recruit children and families with various complex needs to identify issues relevant to service development and implementation for these groups.
Context In Australia, EI for children with disabilities is delivered until the time of school entry (five years of age in most states). EI may continue, however, for the first few years of formal education and children may additionally access therapeutic support at school. Following transition from EI, support is usually provided principally through the education system. In 2006, in recognition of limitations in existing programmes, the Queensland Government, through Department of Communities, Child Safety and Disability Services, provided funding to three non-government organisations (NGOs), Cerebral Palsy League (CPL), MontroseAccess and Sunshine Coast Children’s Therapy Centre (SCCTC) to deliver family-centred EI to children aged birth to nine years with physical disabilities and their families.
Method The interviews reported here are embedded in a longitudinal study charged with evaluating the effectiveness of EI for children with physical disabilities in Queensland (Ziviani et al., 2011b). We obtained ethical clearance for the evaluation from the ethics committee of The University of Queensland (Project number 2008000349), and CPL (2008/2009 1015) in line with National Health and Medical Research guidelines.
Participants and recruitment As part of the larger study, information and consent packages were sent to all carers of children aged less than nine years from the three EI programmes. Participants for the interviews, reported here, were recruited through a process of purposive sampling from total participants (N = 112). Participants from families of indigenous or CALD backgrounds, where children had high support needs, and/or single parent households, were approached. Families where parents had mental or health issues, parents/other family members had a disability, and/or where families lived in regional or rural locations (outside south-east Queensland) were also purposively sampled. Twenty-four families were identified as having these characteristics. Where possible, families manifesting multiple complexities were favoured; however, some families with a single complex need were selected to ensure representation of all characteristics and NGOs. A relationship had already been established during participants’ earlier involvement in the study. Eighteen parents were invited to participate in interviews via telephone, and 10 consented. The main reason for refusal was ‘not interested/too busy’. Parents were given the interview guide before they provided consent,
69
SERVICES FOR COMPLEX CHILDREN AND FAMILIES
which ensured that they were aware of questions being asked and improving their feedback. For nine interviews, mothers were the sole respondent. In the remaining case, both parents participated. In this paper, joint-parent interviews are treated as one interview with quotations attributed to the mother (M) or father (F) as appropriate. Each parent had one child with physical disabilities (mean age = 5.59 2.10, range 3–9 years). Seven children were male, seven had a primary diagnosis of cerebral palsy and others had physical disabilities due to genetic conditions (two children) or spinal cord injury (one child). Sociodemographic details are included in Table 1.
Data collection Interviews were conducted using a semi-structured open-ended guide designed by the investigators. Questions were based on the literature and responses from the larger study’s formal measures. The guide (see Appendix 1) comprised 15 questions. Within each topic, probes were used to elicit further information. Because parents resided across a large geographical area (the state of Queensland), interviews were conducted either over the telephone (60%) or face to face (40%). Where parents lived within 80 km of The University of Queensland, they were offered a choice of home visit or telephone interview. Interviews took an average of 50– 60 minutes to complete. There were no differences in protocol/questions or duration of telephone vs. face-to-face interviews. Interviews were undertaken by two researchers, with one author (RF) being involved in all interviews.
Analyses Interviews were audio-taped with participant consent and content transcribed verbatim. Summaries were sent to parents as part of member checking (Patton, 2002). TABLE 1: Criteria employed for purposive sampling of participating families (N = 10) Family number Child with high support needs Indigenous child Multiple siblings with a disability Primary carer has a significant health condition Single-parent family Culturally and linguistically diverse background Financial strain Rural/remote location
1
2
3
✓
✓
4
5
6
7
8
9
10
✓
✓
✓
✓
✓
✓
✓
✓ ✓ ✓
✓
✓
✓
✓
✓
✓ ✓
Based on participants’ comments, minor changes to content and wording were required for three interview summaries. Content analysis (Patton, 2002) of summaries followed an inductive approach. Such analysis involves examination of numerous texts to identify recurrent themes reflecting the collective voices of participants (Anderson, 2007). Researcher’s personal impressions should be limited and themes named using participants’ words (Anderson). In the preparation phase, individual themes were selected as the unit of analysis and four researchers (SR, PW, YD and RF) read interview summaries several times to become immersed in the data. In the analysis phase, open coding involved making preliminary notes and identifying categories in margins of interview summaries. From content categories, emergent themes and sub-themes were discussed and a coding structure developed from consensus amongst all researchers. NVivo qualitative data analysis software was used to assist data management and coding. Finalising coding involved an iterative process whereby new themes were added, other themes and sub-themes were collapsed into broader higher order themes and coding consistency was reviewed. This procedure continued until all researchers agreed that the final themes fully reflected interview content. In line with the inductive approach taken to analysis, drawing conclusions from coded data was the final task prior to reporting analysis process and results.
Results Major themes to emerge were (i) the nature of services provided by EI programmes, viz., therapy, family support and equipment; (ii) ways in which services were structured and delivered, including ethos of each service; and (iii) managing the child’s needs and planning for the child’s future. Within each of these themes, participants identified facilitators and barriers to accessing EI, and made recommendations for service improvement.
Theme 1: Services received This theme encompassed descriptive information such as parents’ pathways to and services received from EI programmes and other services accessed concurrently, presented in Table 2. Parents also commented specifically on quality of the EI programmes delivered by CPL, MontroseAccess, and SCCTC, discussed further below.
Therapy and equipment ✓
Therapy services were seen as helpful, with six parents reporting satisfaction with therapy quality. Positive aspects included provision of exercises/home programmes and information on therapy approaches and techniques. One parent commented ‘they helped us to understand what was needed, what to do and how to make therapy playbased and integrate it into our routine. They gave us stretches, exercises and good home programs’ (M1). Par-
© 2013 Occupational Therapy Australia
70
J. ZIVIANI ET AL.
ents also commended specific, functional goal-setting and collaboration within the therapy team. Five participants reported dissatisfaction with therapy quality. Two voiced concerns regarding a lack of goalsetting, not having therapeutic approaches adequately explained, insufficient instruction on implementation of therapy at home, and inexperienced staff. M6 felt that there was ‘a lack of teaching/empowering parents to know what to do’. Two parents accessed private therapy due to dissatisfaction with EI and a third was considering doing likewise. Concerns were raised by seven participants (including two who praised therapy quality) regarding the amount of therapy. Five parents had appointments more than monthly and two had appointments less than monthly. Half the parents stated that they would prefer more frequent and longer therapy sessions, and three participants felt that there was insufficient focus on direct ‘hands-on’ therapy, rather than on indirect service provision (completing funding applications, convening parent groups, etc.). Equipment was an aspect of EI parents commented on as being valuable, an unsurprising finding, given that children with physical disabilities were the focus of the study. Five parents commented favourably on equip-
TABLE 2: Service information of participant families (N = 10) Variable Referral pathway Health professionals (hospital staff or private paediatricians) Non-government organisation Self-referred Unknown Wait for EI services None Wait (range 3 weeks–24 months) Unknown Services received from EI programme Family support, social work and/or group programmes Hands-on therapy (physiotherapy, occupational therapy and/or speech pathology) Equipment services Other agencies involved Mode number (range) Support and therapy from Early Childhood Development Programmes, prep or primary school programmes Public health services Therapy through their local hospital Private therapists Disability-specific services and supports Respite Day care Community groups
© 2013 Occupational Therapy Australia
n
5 1 1 3 4 4 2 8 7 4 7 (3–9) 9
8 5 5 5 4 2 2
ment services, and three reported that they had obtained mobility aides such as wheelchairs and standing frames through their EI providers. Further five parents commented on both positive and negative experiences in this area. Frequently cited barriers to accessing equipment included insufficient items available for loan/trial and various problems associated with applying for funding. Families encountered significant delays in obtaining funding and still needed to raise funds personally to supplement monies from government and charitable sources. Participants felt that funding should be easier to access, and the amount provided larger. ‘The problem of obtaining equipment is worse when kids are going into school as they are older and bigger – you need a new car with lifting equipment and you also need home modifications. The need for equipment is also cyclical…when you need to upgrade a wheelchair you also then need a new walker and standing frame’ (M3).
Family support Apart from therapy and equipment, family support was the other key component of EI. Many parents reported valuing these services, ‘the family support worker and social worker are good contacts…they send emails and communicate well about programmes. Family support compliments therapy nicely’ (M1). Two participants conveyed that family support staff had been helpful when they were experiencing problems and had organised respite, parent education/support groups and ‘emotional support for other siblings’ (M2). Most participants who commented favourably on family support nonetheless highlighted deficiencies. Three parents noted issues with availability of family support and two reported that it was unavailable or insufficient in the early years, for example, M3 remarked ‘more support through the initial phase of grieving is needed…no counselling was offered, just information’. Additionally, two participants felt that EI programmes did a poor job of linking them with other parents, who they viewed as valuable sources of support and information.
Theme 2: Service structure and ethos/culture This theme related to parent–provider relationships, including facilitating and impeding factors (i.e. quality of communication, staff turnover) and responsiveness of EI to parental needs and preferences.
Relationships with EI staff Overall, parents were happy with their relationships with EI staff (occupational therapists, speech pathologists, physiotherapists, social workers and family support workers) from the three NGOs. For example, ‘the relationship I have with staff is good. I can speak openly with them and they listen. I also respect their skills’ (M8). Most participants praised the positive characters of staff, with M3 saying that they were ‘very pleasant, kind and helpful’. Parents who reported positive relationships
71
SERVICES FOR COMPLEX CHILDREN AND FAMILIES
with staff commented that they were good at addressing parents’ issues, questions and concerns. Four participants had mixed feelings regarding parent–provider relationships and for them, perceptions differed across individual staff members. M4 indicated variability in her ‘level of comfort with team members’, adding that she had respect for one of the therapists, but that there was poor ‘consistency of contact with the team’. Another mother made mostly positive comments about her relationships with staff, but encountered problems with one team member, leading to her outsource therapy services for that particular discipline. The third parent expressed satisfaction regarding relationships with therapy and social work staff but reported problems with management. Last, when discussing her relationship with EI staff, M6 simply commented ‘the relationship is okay’. Communication. Quality of communication was closely related to parents’ satisfaction with parent–provider relationships. M4 attributed poor communication to a ‘lack of regular face-to-face contact’ with staff. Another mother felt that information regarding types of assistance and level of service provision parents could expect was not well communicated. One parent (M7) who commented favourably on communication felt that staff were ‘very clear about what support they can offer’. Continuity of staff. Seven parents stated that high staff turnover affected their relationship with EI providers due to a lack of continuous follow-up with a particular individual or team. Physiotherapy appeared most affected by turnover. Participants further commented on service provision gaps due to unfilled vacancies on teams. Some acknowledged that recruitment and retention difficulties were largely attributable to wider service system issues rather than being under the control of individual EI programmes. Two parents felt that difficulties with recruiting and retaining staff stemmed from pay discrepancies between NGOs and government agencies. An additional concern related to staff turnover was that therapists required considerable time to get to know children and families, and parents repeatedly needed to provide background history and information to new staff.
Responsiveness to child and family needs Apart from parent–professional relationships, a key aspect of service structure and ethos/culture was responsiveness of EI to child and family needs. Most (seven) parents perceived programmes as ‘family centred’, involving all family members (not just children), and felt that their needs were appropriately considered and supported. Comments about appointment times were mixed; half the parents reported that EI was flexible in meeting families’ needs in this respect. M8 commented ‘they try and be as flexible with appointment
times as they can’. Where appointments were not offered outside school hours, parents felt that was problematic as children had to miss school to attend EI. Furthermore, having regular therapy sessions in school time was seen as a considerable disruption to school routines. Many parents (six) expressed satisfaction with the EI location, reporting that appointment venue was generally negotiable depending on their preferences and routines. M6 liked ‘flexibility around venues for appointments… therapists visited us at home because I had two children and was pregnant’. Two parents commented on accessibility of their EI centres, with mixed reports. However, the mother who expressed concerns regarding the distant location of the centre acknowledged that home visits were offered where possible.
Navigating the service system Some parents placed considerable value on the extent to which EI responded to their information needs. Of the four parents who commented on this issue, three expressed dissatisfaction with information quantity and quality. Parents frequently sourced information outside EI. Those with school-aged children generally obtained information from therapists, teachers and support staff at their child’s school. Where applicable, parents received information from hospital-based therapists, disability-specific services/supports (two parents), community health nurses, the government statutory agency Centrelink and personal contacts (one parent each). Regarding information on other available services and supports, many participants felt that they had to ‘learn the system’ themselves as relevant material often was not accessible. Most parents used the Internet and around half obtained information ‘via word of mouth’ through other parents (mostly mothers) they met informally at EI centres or their child’s school. A recurring comment was that parents needed to be proactive and ‘push for services’. Two parents commented on needing to remind EI staff to follow up on specific issues. Concerning service coordination, parents reported that various agencies tended not to liaise with each other or link services adequately. Particularly troubling to parents was the fact that communication between children’s schools and EI teams was often perceived as lacking. As a result of poor interagency collaboration, parents reported that they had to act as their own service coordinators rather than being able to rely on EI staff to do this. M1 said ‘organisations don’t communicate or interact with each other, parents have to do it’.
Theme 3: Managing their child’s needs and planning for the future This theme encompassed parents’ management of their child’s daily care needs, as well as planning for their child’s future, especially negotiating life transitions, such as starting school. © 2013 Occupational Therapy Australia
72
Providing daily support Overall, parents reported feeling mostly competent and confident in supporting their child. Some reported that while things had been particularly difficult (both emotionally and physically) early on, they had acquired practical and coping skills over the years. A mother of a child with high support needs said, ‘we are old hands – we have it pretty well down pat’. While parents tended to feel more capable as children aged, they faced additional challenges due to increasing physical needs of children, especially if children were not able to mobilise. Three parents reported having back problems secondary to lifting and transferring tasks. Furthermore, to maximise opportunities for mobilising, parents expressed reluctance to use equipment such as hoists. One mother said, ‘looking after (my son) is a balance between my physical limits and his physical abilities’ (M3). Further issues were identified around managing financial costs of raising a child with physical disabilities. Numerous parents stressed the additional expenses incurred for example, specialist appointments, equipment and home/vehicle modifications. One single mother said, ‘fundraising for big items for example, bathroom modifications is also needed. It’s not possible to cover the gaps in funding for those large items as it sometimes is with the smaller, less expensive ones’ (M10). Two mothers discussed workforce participation difficulties, commenting that they left paid employment to fulfil caring duties, significantly reducing their ability to manage financially. Quality of parents’ informal support networks was associated with parents feeling supported with practical aspects of their caring role. Seven parents reported that they would benefit from greater support from extended family, friends and/or local community. In some cases, even where families resided locally, their ability to provide support was limited, given competing family commitments and/or significant physical requirements associated with caring for children, for example, lifting and transferring. This latter issue was particularly relevant for grandparents. Feedback regarding community supports was mixed; however, even where parents encountered acceptance, they did not receive much assistance from community members.
Preparing for the future Apart from managing their child’s daily needs, parents discussed issues of preparedness, including anticipating transition events and addressing concerns regarding their child’s future. Parents felt that more could have been done in planning EI services, key life transitions and exiting EI, and stressed the importance of focusing on the future even when children are young. One mother felt ‘annual planning would be very good, being helped to make realistic goals for the next twelve
© 2013 Occupational Therapy Australia
J. ZIVIANI ET AL.
months. A bigger picture would be helpful, maybe therapists could discuss with us what the next steps are after achieving goals’ (M3). Issues regarding key transition points, particularly school entry were of prominence. Two parents commented that EI teams included a transition teacher and that therapy assisted with skill development, preparing their child for school. Other parents felt that they had insufficient information and support to assist them with decision-making around schooling options. Some parents highlighted needing information and assistance around subsequent key transition points, for example, commencing high school. M9, whose child had high support needs, highlighted a lack of ‘planning for the transitions from primary to high school and to adulthood’. Eight parents conveyed worries regarding exiting EI and many did not know how long they would be able to access services. One mother said, ‘I am not sure if we will just be cut off. I think we will get no support after (my daughter) turns nine…we haven’t really been given any information’ (M5). Other parents expressed more immediate concerns about reduction or loss of EI following school entry. Often, they did not have an understanding of how service provision would change as a result of this transition. A comment was made: ‘we were surprised to learn that starting school reduces access to the service. We were not prepared for the change and did not know what services the centre would continue to offer us’ (F2).
Discussion Facilitators The current study pointed to many positive perceptions of service delivery. Most participants conveyed satisfaction with their relationships with EI staff, and felt that therapy services were of high quality. Parents valued family support, which was seen as complementary to therapy, and central to FCP. Provision of family support improves satisfaction with EI programmes, and has positive effects on family health-related quality of life (Davis & Gavidia-Payne, 2009). Parents commented favourably on FCP, although felt that various family-centred behaviours occurred to differing extents. Brotherson and Goldstein (1992) found that parents had concerns regarding flexibility of EI, particularly timing of therapy and other appointments. Conversely, more than half our participants felt that appointments generally accommodated their routine.
Barriers and recommendations While commenting favourably on many aspects of EI, families also raised concerns, including frequency of therapy sessions. Amount of therapy is central to satisfaction with EI; often parents feel that their child requires more (Hiebert-Murphy, Trute & Wright, 2011; James & Chard, 2010). As with these previous reports, our parents
73
SERVICES FOR COMPLEX CHILDREN AND FAMILIES
attributed a lack of therapy to organisational constraints, for example, staff shortages, large caseloads and insufficient funds/resources. There is a need to establish clear guidelines for EI from the initial interaction with families (Vacca & Feinberg, 2000) so parents develop realistic expectations regarding levels of service provision. Equipment services were of the utmost importance to participants and this is consistent with what is known about the needs of families of children with physical disabilities (Clark & MacArthur, 2008) who often require greater access to funding for items such as wheelchairs and continence aids (Hinton, 2007). Funding is crucial when children have limited functional mobility and/or when families experience financial strain (Almasri et al., 2011). Overall, parents reported satisfaction with their relationships with EI staff; however, some felt that this was compromised by high staff turnover. The importance of building strong, collaborative partnerships with health professionals has been highlighted for children with chronic health conditions by Kratz, Uding, Trahms, Villareale and Kieckhefer (2009). In addition to issues of lost time, staff turnover can be concerning for parents when high-quality relationships have been forged with previous staff members (James & Chard, 2010). Parents in our study sought more information on their child’s disability and available services and supports. These comments are consistent with our other evaluation findings that parents who perceived provision of general information as being provided in a family-centred manner were more satisfied with services (Ziviani, Feeney & Khan, 2011a). Similar to the study by Palisano et al. (2010) on service needs of parents of children with cerebral palsy, the present study identified information needs about ‘services their child might receive in the future’, ‘services that are presently available’ and ‘planning for their child’s future well-being’. Parents often felt that various agencies with which they were involved communicated and coordinated services poorly, consistent with our broader study where parents reported relatively less satisfaction with service coordination and quality/availability of other community services (Ziviani, Cuskelly & Feeney, 2010). Other studies have found that parents are responsible for sourcing and coordinating different services they access for their child (James & Chard, 2010), highlighting the need for family-centred service coordination, which reduces families’ requirements for psychosocial support resources (Trute, Hiebert-Murphy & Wright, 2008).
Managing children’s needs and planning for the future The significant burdens placed on parents of children with physical disabilities have been highlighted previously. Mothers needed to ‘balance’ numerous competing demands, including family/home commitments, caring duties and engaging in EI (Thompson, 1998).
Families of children with physical disabilities often report greater disturbances to family life; this has been attributed to increased burden of care resulting from physical difficulties (Eddy & Engel, 2008). Larson (2010) found that parents’ ‘capacity to manage life demands’ and having supportive family relationships were key contributors to well-being. In this study, parents benefitted from support from family and friends (where available), or wanted more help (where this support was lacking). There are financial implications of raising a child with a disability (Thompson), and common issues were raised here, for example, private therapy costs and lost income. Children’s use of adaptive equipment (most common amongst children with physical disabilities) significantly impacts mothers’ decisions regarding workforce participation (Warfield, 2001). The importance of being informed about and prepared for the future, including key transition events, stressed by our parents, has also been reported for children with cerebral palsy and other disabilities (Hinton, 2007) and chronic health conditions (Kratz et al., 2009). There are potential long-term impacts of success in community and school transitions on children’s later academic and social achievement (Rous, Hallam, Harbin, McCormick & Jung, 2007). Evidence also points to the value of parents experiencing successful transitions as a mechanism to achieve greater self-efficacy as a carer and advocate (Guimond, Wilcox & Lamorey, 2008).
Impact of complex needs While it is reasonable to expect that participants would have additional difficulties accessing EI, often issues did not appear related to complexities of parents, their child and/or family. Primarily, feedback was consistent with more general EI studies. Thus, it appears families with complex needs may have similar expectations and service requirements to other families. This finding is supported by our broader evaluation, where the manner in which EI was delivered, rather than characteristics of children and families accessing services, determined parents’ satisfaction with EI (Ziviani et al., 2011a).
Limitations Some limitations should be acknowledged. First, findings were aggregated across EI programmes, which differ somewhat in terms of their client base, service delivery models and organisational characteristics. However, while programmes differed, the feedback provided by parents was fairly consistent. Second, the sample size (N = 10) represented only 55.6% of those invited to participate. This response rate is in keeping with that reported in other studies of EI for children with disabilities. These families often do not participate in research due to competing responsibilities and demands on their time. There are no concerns regarding representativeness of participants as they were purposefully sampled with the aim of understanding experiences of parents with © 2013 Occupational Therapy Australia
74 children/families with complex needs. Third, the small number of participants with some characteristics of interest makes it difficult to draw conclusions regarding the impact of those factors. Furthermore, we cannot fully understand ‘additional difficulties’ experienced by families with complex needs without some frame of comparison. Fourth, due to time constraints of the broader evaluation, interviews were conducted at a single time point, and so did not provide insights into how parents’ perceptions may change over time. Fifth, in qualitative studies, personal characteristics and backgrounds of investigators can potentially influence study methodology and theme identification. Introduction of bias was minimised through use of researchers from numerous disciplinary backgrounds, audio recordings and member checking (Padgett, 2008). Future research could extend upon the work presented here by examining these issues with a small sample of families from more privileged backgrounds and tracking change over time through prolonged engagement with families.
Conclusion This study enhances our understanding of how families with complex needs regard EI, the extent to which programmes meet their expectations, and barriers to access. Parents identified numerous positive aspects of EI, but also highlighted issues with service provision. Also, while most families reported that they were happy with the parent–provider relationship, they also reported that this relationship was affected by high staff turnover. Parents expressed further concerns regarding the frequency of therapy appointments, and felt that the relatively low level of service provision adversely impacted the quality of communication between providers and themselves. Various parent-led suggestions were provided. Most importantly, participants stressed the need for unambiguous information on the amount and type of services offered and length of time EI could be accessed to be provided from the outset. Generally, feedback regarding experiences of accessing EI did not appear related to particular attributes of parents or their child. However, two characteristics seemingly influenced parents’ perceptions of managing their child’s needs and planning for the future, namely parents with health problems and single mothers.
Acknowledgements The authors thank the Department of Communities, Child Safety and Disability Services for their financial support to this project.
References Almasri, N., Palisano, R. J., Dunst, C., Chiarello, L. A., O’Neil, M. E. & Polansky, M. (2011). Profiles of family
© 2013 Occupational Therapy Australia
J. ZIVIANI ET AL.
needs of children and youth with cerebral palsy. Child: Care, Health and Development, 38 (6), 798–806. Anderson, R. (2007). Thematic content analysis (TCA): Descriptive presentation of qualitative data. Retrieved 1 September, 2012, from http://www.wellknowingconsulting.org/publications/pdfs/ThematicContentAnalysis.pdf Bailey, D. B., Skinner, D., Correa, V., Arcia, E., Reyes-Blanes, M. E., Rodriguez, P. et al. (1999). Needs and supports reported by Latino families of young children with developmental disabilities. American Journal on Mental Retardation, 104 (5), 437–451. Balcazar, F. E., Suarez-Balcazar, Y., Taylor-Ritzler, T. & Keys, C. B. (2009). Race, culture and disability: rehabilitation science and practice. Boston: Jones and Bartlett. Brotherson, M. J. & Goldstein, B. L. (1992). Time as a resource and constraint for parents of young children with disabilities: Implications for early intervention services. Topics in Early Childhood Special Education, 12 (4), 508–527. Clark, P. & MacArthur, J. (2008). Children with physical disability: Gaps in service provision, problems joining in. Journal of Paediatrics and Child Health, 44, 455–458. Darling, S. M. & Gallagher, P. A. (2004). Needs of and supports for African American and European American caregivers of young children with special needs in urban and rural settings. Topics in Early Childhood Special Education, 24 (2), 98–109. Davis, K. & Gavidia-Payne, S. (2009). The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities. Journal of Intellectual and Developmental Disability, 34 (2), 153–162. DiGiacomo, M., Davidson, P. M., Abbott, P., Delaney, P., Dharmendra, T., McGrath, S. J. et al. (2013). Childhood disability in Aboriginal and Torres Strait Islander peoples: A literature review. International Journal for Equity in Health, 12 (1), 7. Eddy, L. L. & Engel, J. M. (2008). The impact of child disability type on the family. Rehabilitation Nursing, 33 (3), 98–103. Garcia, S. B., Mendez-Perez, A. & Ortiz, A. A. (2000). Mexican American mothers’ beliefs about disabilities: Implications for early childhood intervention. Remedial and Special Education, 21, 90–100. Guimond, A. B., Wilcox, M. J. & Lamorey, S. G. (2008). The early intervention parenting self-efficacy scale (EIPSES): Scale construction and initial psychometric evidence. Journal of Early Intervention, 30 (4), 295–320. Hebbeler, K., Spiker, D., Mallik, S., Scarborough, A. & Simeonsson, R. J. (2003). The National Early Intervention Longitudinal Study. Demographic characteristics of children and families entering early intervention. NEILS Data Report 3. Menlo Park, CA: SRI International. Hiebert-Murphy, D., Trute, B. & Wright, A. (2011). Parents’ definition of effective child disability support services: Implications for implementing family-centered practice. Journal of Family Social Work, 14, 144–158. Hinton, T. (2007). Forgotten families: Raising children with disabilities in Tasmania. Tasmania: Anglicare Tasmania Incorporated. James, C. & Chard, G. (2010). A qualitative study of parental experiences of participation and partnership in an
75
SERVICES FOR COMPLEX CHILDREN AND FAMILIES
early intervention service. Infants and Young Children, 23 (4), 275–285. Johnson, K. & Theberge, S. (2007). Reducing disparities beginning in early childhood, National Center for Children in Poverty. Retrieved 2 September, 2012, from http://www.nccp.org/publications/pub_744.html Kochanek, T. T. & Buka, S. L. (1998). Influential factors in the utilization of early intervention services. Journal of Early Intervention, 21 (4), 323–338. Kratz, L., Uding, N., Trahms, C. M., Villareale, N. & Kieckhefer, G. M. (2009). Managing childhood chronic illness: Parent perspectives and implications for parent-provider relationships. Families, Systems and Health, 27 (4), 303–313. Larson, E. (2010). Identifying indicators of well-being for caregivers of children with disabilities. Occupational Therapy International, 17 (1), 29–39. Nolan, K. W., Young, E. C., Herbert, E. B. & Wilding, G. E. (2005). Service coordination for children with complex healthcare needs in an early intervention program. Infants and Young Children, 18 (2), 161–170. Padgett, D. K. (2008). Qualitative methods in social work research. Los Angeles, California: Sage. doi: 10.4135/ 9781412963909.n7 Palisano, R. J., Almarsi, N., Chiarello, L. A., Orlin, M. N., Bagley, A. & Maggs, J. (2010). Family needs of parents of children and youth with cerebral palsy. Child: Care, Health and Development, 36 (1), 85–92. Patton, M. (2002). Qualitative research and evaluation methods. California: Sage Publications. Ridgley, R. & Hallam, R. (2006). Examining the IFSPs of rural, low-income families: Are they reflective of family concerns? Journal of Research, 21, 149–162. Rous, B., Hallam, R., Harbin, G., McCormick, K. & Jung, L. A. (2007). The transition process for young children with disabilities: A conceptual framework. Infants and Young Children, 20 (2), 135–148. Stewart, M. (2012). Experiences of families living in rural and remote British Columbia with a child with a disability or developmental delay. Unpublished doctoral dissertation. Vancouver: The University of British Columbia. Thompson, K. M. (1998). Early intervention services in daily family life: Mothers’ perceptions of ‘ideal’ versus ‘actual’ service provision. Occupational Therapy International, 5 (3), 206–221. Tomasello, N. M., Manning, A. R. & Dulmus, C. N. (2010). Family-centred early intervention for infants and toddlers with disabilities. Journal of Family Social Work, 13, 163–172. Trute, B., Hiebert-Murphy, D. & Wright, A. (2008). Family-centred service coordination in childhood health and disability services: The search for meaningful service outcome measures. Child: Care, Health and Development, 34 (3), 367–372. Unger, D., Jones, C. & Park, E. (2001). Promoting involvement between low-income single caregivers and urban early intervention programs. Topics in Early Childhood Special Education, 12 (4), 195–210. Vacca, J. & Feinberg, E. (2000). Why can’t families be more like us? Henry Higgins confronts Eliza Doolittle in the world of early intervention. Infants and Young Children, 13 (1), 40–48.
Warfield, M. E. (2001). Employment, parenting, and well-being among mothers of children with disabilities. Mental Retardation, 39 (4), 297–309. Ziviani, J., Cuskelly, M. & Feeney, R. (2010). Parent satisfaction with early intervention services for children with physical disabilities: Internal consistency of the European Parent Satisfaction Scale about Early Intervention. Infants and Young Children, 23 (3), 184–194. Ziviani, J., Feeney, R. & Khan, A. (2011a). Early intervention services for children with physical disabilities: Parents’ perceptions of family-centredness and service satisfaction. Infants and Young Children, 24 (4), 1. Ziviani, J., Feeney, R., Rodger, S., Watter, P., Brown, R., Head, B. et al. (2011b). Primary research on early intervention services for children with a physical disability: Final Report to Department of Communities (Disability and Community Care Services). Brisbane, Queensland: The University of Queensland.
Appendix 1 Qualitative Interviews Guide 1. Tell me about the services that you and your family are currently receiving from (service provider organisation). 2. Are you receiving services from other organisations? 3. Can you tell me when these services commenced and how regularly you receive them? 4. What do you like about the early intervention services you receive? 5. What do you not like about the early intervention services you receive? 6. Are there any changes that you would suggest about how these services are provided? 7. What is your understanding of who can access early intervention services from (service provider organisation) and at what point families may leave the service? 8. What are your ideal expectations in terms of the support you and your family receive from the early intervention service? 9. Can you tell me about any difficulties you have experienced in getting these early intervention services? 10. Can you explain how and where you access these services and if the way they are offered fits in with your family situation? 11. How do you get information that can help you in managing your child’s and family’s needs? 12. How would you describe the relationship you have with early intervention staff? 13. Can you think of anything that you need help with that is not currently being provided by (service provider organisation) or other organisations)? 14. Do you have any concerns for the future, for example, once you leave the early intervention service? 15. Is there anything else you would like me to know about the way you access services for your child? Within each broader question, targeted probing questions were used to elicit further information. © 2013 Occupational Therapy Australia
doi: 10.1111/1440-1630.12059
Research Article
Early intervention services of children with physical disabilities: Complexity of child and family needs Jenny Ziviani,1,2 Yvonne Darlington,3 Rachel Feeney,2 Sylvia Rodger2 and Pauline Watter2 1
Children’s Allied Health Research, Queensland Health, 2School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Queensland, Australia, and 3School of Social Work and Human Services, The University of Queensland, Brisbane, Queensland, Australia
Background/aim: To gain insight into the special issues confronting parents when accessing early intervention for children with physical disabilities where child and/or family characteristics indicate complex needs within the unique Australian context. Methods: Qualitative interviews with families receiving early intervention for their children with physical disabilities (N = 10). Families with complex circumstances such as having children with high support needs, those from culturally and linguistically diverse backgrounds, and single-parent families were recruited to the study. Families where parents had mental or health issues, parents/other family members had an identified disability, and/or where families lived in regional or rural locations were also purposively sampled. Results: Participants highlighted issues around (i) the nature of early intervention services provided; (ii) the ways in which services were structured; and (ii) managing their child’s needs/planning into the future. Parents stressed the importance of having access to a variety of early intervention services aside from therapy. They also emphasised the need for greater clarity about what to expect from services, the intensity of therapy, other services they could access and how long they would be able to receive these. Conclusions: Despite their complex circumstances and needs, participants’ experiences of accessing early interJenny Ziviani PhD, MEd, BA, BAppSc (OT); Conjoint Professor. Yvonne Darlington PhD, MEdSt, BOccThy; Professor. Rachel Feeney MPhty, BPhty; Senior Lecturer. Sylvia Rodger PhD, PGDipAdvSWPractice, BA, BSocWk; Senior Lecturer. Pauline Watter BSpPath, CertTESOL; Research Officer. Correspondence: Jenny Ziviani, The University of Queensland, Level 3 Foundation Building Royal Children’s Hospital, Herston Road, Herston, Brisbane, Qld 4006, Australia. Email: [email protected] Accepted for publication 4 May 2013. © 2013 Occupational Therapy Australia
vention services were largely consistent with the broader research literature. Of the parents interviewed, those with health problems and single mothers expressed most apprehension about managing their child’s needs and planning for the future. KEY WORDS early intervention, family-centred practice, qualitative research, disability.
Introduction Early intervention (EI) for children with physical disabilities can enhance child developmental outcomes, improve parents’ ability to care for their children in the context of their own needs and increase family quality of life. In delivering EI, providers should consider the unique developmental challenges and strengths of children and circumstances of their families if they are to operate in a manner consistent with family-centred practice (FCP) (Tomasello, Manning & Dulmus, 2010). It is important to appreciate the potentially unique experiences of children with disabilities where their families also face challenging circumstances because of the growing prevalence of this group amongst those accessing EI (Nolan, Young, Herbert & Wilding, 2005). Furthermore, the addition of family complexities can pose risks for children’s health and development (Johnson & Theberge, 2007). Complex needs may stem from characteristics of children (e.g. severe level of disability, significant medical issues) or their parents/family (e.g. culturally and linguistically diverse groups, single parents, low-income and rural families). Hebbeler, Spiker, Mallik, Scarborough and Simeonsson (2003) found a significant proportion of children receiving EI come from culturally and linguistically diverse (CALD) backgrounds, single-parent or foster care households and/or have other family members with special needs. Children and families’ complex circumstances tend to co-occur with an average of two risk factors per family (Hebbeler et al.). Previous studies regarding families with complex needs receiving EI primarily centre on the United
68 States (US), with relatively less research having been undertaken in Australia. Hence, our discussion of existing literature largely draws upon findings from the US. While service underutilisation has been reported amongst low-income (Unger, Jones & Park, 2001), rural (Stewart, 2012) CALD (Balcazar, Suarez-Balcazar, Taylor-Ritzler, Keys & Race, 2009) and Australian indigenous families (DiGiacomo et al., 2013), provider and programme characteristics may be better determinants of service use (Kochanek & Buka, 1998). Garcia, Mendez-Perez and Ortiz (2000) interviewed Mexican American mothers of children with language disabilities and found sociocultural background influenced their perceptions of typical childhood development. Often, mothers’ belief that their child would ‘catch up’ with age resulted in a disinclination to perceive their child had a disability or to seek and implement therapeutic interventions. Unger and colleagues reported that amongst lowincome single caregivers, engagement in EI was related to understanding of childhood development/behaviour, family functioning and moderated by stress and the nature of programmes accessed. Previous research has examined service needs of families with complex needs. Bailey et al. (1999) observed that while Mexican and Puerto Rican parents of children with developmental disabilities reported a comparatively greater number and range of service needs, types of needs were consistent with those reported by other families. Similarly, Darling and Gallagher (2004) found that African Americans (AA) and European Americans (EA) differed considerably concerning family needs, whereas urban and rural dwelling caregivers diverged regarding the level of support received. Rural, low-income families of children with disabilities have identified three chief concerns: (i) parenting and accessing toys/materials for their child; (ii) addressing their child’s health needs; and (iii) family issues (Ridgley & Hallam, 2006). Findings around travel costs for rural families were echoed by Stewart (2012), who found that these families travel to EI more often than urban families and associated expenses constitute barriers to service access. While families with complex needs differ from other families regarding service needs, researchers have warned against assuming all families with particular characteristics have similar needs and perceptions of EI, especially considering the importance of programme characteristics in shaping parents’ experiences. Given existing gaps in the literature, we sought to gain understanding of experiences of Australian families with complex needs receiving EI. Australia has a unique sociodemographic profile, population distribution, and health, welfare and disability service systems, which may result in findings varying from those reported in other countries. Primarily we aimed to identify issues (facilitators/barriers) families encounter accessing EI services for their child with physical disabilities, and what insights into service provision could be gained. © 2013 Occupational Therapy Australia
J. ZIVIANI ET AL.
Purposive sampling was employed to recruit children and families with various complex needs to identify issues relevant to service development and implementation for these groups.
Context In Australia, EI for children with disabilities is delivered until the time of school entry (five years of age in most states). EI may continue, however, for the first few years of formal education and children may additionally access therapeutic support at school. Following transition from EI, support is usually provided principally through the education system. In 2006, in recognition of limitations in existing programmes, the Queensland Government, through Department of Communities, Child Safety and Disability Services, provided funding to three non-government organisations (NGOs), Cerebral Palsy League (CPL), MontroseAccess and Sunshine Coast Children’s Therapy Centre (SCCTC) to deliver family-centred EI to children aged birth to nine years with physical disabilities and their families.
Method The interviews reported here are embedded in a longitudinal study charged with evaluating the effectiveness of EI for children with physical disabilities in Queensland (Ziviani et al., 2011b). We obtained ethical clearance for the evaluation from the ethics committee of The University of Queensland (Project number 2008000349), and CPL (2008/2009 1015) in line with National Health and Medical Research guidelines.
Participants and recruitment As part of the larger study, information and consent packages were sent to all carers of children aged less than nine years from the three EI programmes. Participants for the interviews, reported here, were recruited through a process of purposive sampling from total participants (N = 112). Participants from families of indigenous or CALD backgrounds, where children had high support needs, and/or single parent households, were approached. Families where parents had mental or health issues, parents/other family members had a disability, and/or where families lived in regional or rural locations (outside south-east Queensland) were also purposively sampled. Twenty-four families were identified as having these characteristics. Where possible, families manifesting multiple complexities were favoured; however, some families with a single complex need were selected to ensure representation of all characteristics and NGOs. A relationship had already been established during participants’ earlier involvement in the study. Eighteen parents were invited to participate in interviews via telephone, and 10 consented. The main reason for refusal was ‘not interested/too busy’. Parents were given the interview guide before they provided consent,
69
SERVICES FOR COMPLEX CHILDREN AND FAMILIES
which ensured that they were aware of questions being asked and improving their feedback. For nine interviews, mothers were the sole respondent. In the remaining case, both parents participated. In this paper, joint-parent interviews are treated as one interview with quotations attributed to the mother (M) or father (F) as appropriate. Each parent had one child with physical disabilities (mean age = 5.59 2.10, range 3–9 years). Seven children were male, seven had a primary diagnosis of cerebral palsy and others had physical disabilities due to genetic conditions (two children) or spinal cord injury (one child). Sociodemographic details are included in Table 1.
Data collection Interviews were conducted using a semi-structured open-ended guide designed by the investigators. Questions were based on the literature and responses from the larger study’s formal measures. The guide (see Appendix 1) comprised 15 questions. Within each topic, probes were used to elicit further information. Because parents resided across a large geographical area (the state of Queensland), interviews were conducted either over the telephone (60%) or face to face (40%). Where parents lived within 80 km of The University of Queensland, they were offered a choice of home visit or telephone interview. Interviews took an average of 50– 60 minutes to complete. There were no differences in protocol/questions or duration of telephone vs. face-to-face interviews. Interviews were undertaken by two researchers, with one author (RF) being involved in all interviews.
Analyses Interviews were audio-taped with participant consent and content transcribed verbatim. Summaries were sent to parents as part of member checking (Patton, 2002). TABLE 1: Criteria employed for purposive sampling of participating families (N = 10) Family number Child with high support needs Indigenous child Multiple siblings with a disability Primary carer has a significant health condition Single-parent family Culturally and linguistically diverse background Financial strain Rural/remote location
1
2
3
✓
✓
4
5
6
7
8
9
10
✓
✓
✓
✓
✓
✓
✓
✓ ✓ ✓
✓
✓
✓
✓
✓
✓ ✓
Based on participants’ comments, minor changes to content and wording were required for three interview summaries. Content analysis (Patton, 2002) of summaries followed an inductive approach. Such analysis involves examination of numerous texts to identify recurrent themes reflecting the collective voices of participants (Anderson, 2007). Researcher’s personal impressions should be limited and themes named using participants’ words (Anderson). In the preparation phase, individual themes were selected as the unit of analysis and four researchers (SR, PW, YD and RF) read interview summaries several times to become immersed in the data. In the analysis phase, open coding involved making preliminary notes and identifying categories in margins of interview summaries. From content categories, emergent themes and sub-themes were discussed and a coding structure developed from consensus amongst all researchers. NVivo qualitative data analysis software was used to assist data management and coding. Finalising coding involved an iterative process whereby new themes were added, other themes and sub-themes were collapsed into broader higher order themes and coding consistency was reviewed. This procedure continued until all researchers agreed that the final themes fully reflected interview content. In line with the inductive approach taken to analysis, drawing conclusions from coded data was the final task prior to reporting analysis process and results.
Results Major themes to emerge were (i) the nature of services provided by EI programmes, viz., therapy, family support and equipment; (ii) ways in which services were structured and delivered, including ethos of each service; and (iii) managing the child’s needs and planning for the child’s future. Within each of these themes, participants identified facilitators and barriers to accessing EI, and made recommendations for service improvement.
Theme 1: Services received This theme encompassed descriptive information such as parents’ pathways to and services received from EI programmes and other services accessed concurrently, presented in Table 2. Parents also commented specifically on quality of the EI programmes delivered by CPL, MontroseAccess, and SCCTC, discussed further below.
Therapy and equipment ✓
Therapy services were seen as helpful, with six parents reporting satisfaction with therapy quality. Positive aspects included provision of exercises/home programmes and information on therapy approaches and techniques. One parent commented ‘they helped us to understand what was needed, what to do and how to make therapy playbased and integrate it into our routine. They gave us stretches, exercises and good home programs’ (M1). Par-
© 2013 Occupational Therapy Australia
70
J. ZIVIANI ET AL.
ents also commended specific, functional goal-setting and collaboration within the therapy team. Five participants reported dissatisfaction with therapy quality. Two voiced concerns regarding a lack of goalsetting, not having therapeutic approaches adequately explained, insufficient instruction on implementation of therapy at home, and inexperienced staff. M6 felt that there was ‘a lack of teaching/empowering parents to know what to do’. Two parents accessed private therapy due to dissatisfaction with EI and a third was considering doing likewise. Concerns were raised by seven participants (including two who praised therapy quality) regarding the amount of therapy. Five parents had appointments more than monthly and two had appointments less than monthly. Half the parents stated that they would prefer more frequent and longer therapy sessions, and three participants felt that there was insufficient focus on direct ‘hands-on’ therapy, rather than on indirect service provision (completing funding applications, convening parent groups, etc.). Equipment was an aspect of EI parents commented on as being valuable, an unsurprising finding, given that children with physical disabilities were the focus of the study. Five parents commented favourably on equip-
TABLE 2: Service information of participant families (N = 10) Variable Referral pathway Health professionals (hospital staff or private paediatricians) Non-government organisation Self-referred Unknown Wait for EI services None Wait (range 3 weeks–24 months) Unknown Services received from EI programme Family support, social work and/or group programmes Hands-on therapy (physiotherapy, occupational therapy and/or speech pathology) Equipment services Other agencies involved Mode number (range) Support and therapy from Early Childhood Development Programmes, prep or primary school programmes Public health services Therapy through their local hospital Private therapists Disability-specific services and supports Respite Day care Community groups
© 2013 Occupational Therapy Australia
n
5 1 1 3 4 4 2 8 7 4 7 (3–9) 9
8 5 5 5 4 2 2
ment services, and three reported that they had obtained mobility aides such as wheelchairs and standing frames through their EI providers. Further five parents commented on both positive and negative experiences in this area. Frequently cited barriers to accessing equipment included insufficient items available for loan/trial and various problems associated with applying for funding. Families encountered significant delays in obtaining funding and still needed to raise funds personally to supplement monies from government and charitable sources. Participants felt that funding should be easier to access, and the amount provided larger. ‘The problem of obtaining equipment is worse when kids are going into school as they are older and bigger – you need a new car with lifting equipment and you also need home modifications. The need for equipment is also cyclical…when you need to upgrade a wheelchair you also then need a new walker and standing frame’ (M3).
Family support Apart from therapy and equipment, family support was the other key component of EI. Many parents reported valuing these services, ‘the family support worker and social worker are good contacts…they send emails and communicate well about programmes. Family support compliments therapy nicely’ (M1). Two participants conveyed that family support staff had been helpful when they were experiencing problems and had organised respite, parent education/support groups and ‘emotional support for other siblings’ (M2). Most participants who commented favourably on family support nonetheless highlighted deficiencies. Three parents noted issues with availability of family support and two reported that it was unavailable or insufficient in the early years, for example, M3 remarked ‘more support through the initial phase of grieving is needed…no counselling was offered, just information’. Additionally, two participants felt that EI programmes did a poor job of linking them with other parents, who they viewed as valuable sources of support and information.
Theme 2: Service structure and ethos/culture This theme related to parent–provider relationships, including facilitating and impeding factors (i.e. quality of communication, staff turnover) and responsiveness of EI to parental needs and preferences.
Relationships with EI staff Overall, parents were happy with their relationships with EI staff (occupational therapists, speech pathologists, physiotherapists, social workers and family support workers) from the three NGOs. For example, ‘the relationship I have with staff is good. I can speak openly with them and they listen. I also respect their skills’ (M8). Most participants praised the positive characters of staff, with M3 saying that they were ‘very pleasant, kind and helpful’. Parents who reported positive relationships
71
SERVICES FOR COMPLEX CHILDREN AND FAMILIES
with staff commented that they were good at addressing parents’ issues, questions and concerns. Four participants had mixed feelings regarding parent–provider relationships and for them, perceptions differed across individual staff members. M4 indicated variability in her ‘level of comfort with team members’, adding that she had respect for one of the therapists, but that there was poor ‘consistency of contact with the team’. Another mother made mostly positive comments about her relationships with staff, but encountered problems with one team member, leading to her outsource therapy services for that particular discipline. The third parent expressed satisfaction regarding relationships with therapy and social work staff but reported problems with management. Last, when discussing her relationship with EI staff, M6 simply commented ‘the relationship is okay’. Communication. Quality of communication was closely related to parents’ satisfaction with parent–provider relationships. M4 attributed poor communication to a ‘lack of regular face-to-face contact’ with staff. Another mother felt that information regarding types of assistance and level of service provision parents could expect was not well communicated. One parent (M7) who commented favourably on communication felt that staff were ‘very clear about what support they can offer’. Continuity of staff. Seven parents stated that high staff turnover affected their relationship with EI providers due to a lack of continuous follow-up with a particular individual or team. Physiotherapy appeared most affected by turnover. Participants further commented on service provision gaps due to unfilled vacancies on teams. Some acknowledged that recruitment and retention difficulties were largely attributable to wider service system issues rather than being under the control of individual EI programmes. Two parents felt that difficulties with recruiting and retaining staff stemmed from pay discrepancies between NGOs and government agencies. An additional concern related to staff turnover was that therapists required considerable time to get to know children and families, and parents repeatedly needed to provide background history and information to new staff.
Responsiveness to child and family needs Apart from parent–professional relationships, a key aspect of service structure and ethos/culture was responsiveness of EI to child and family needs. Most (seven) parents perceived programmes as ‘family centred’, involving all family members (not just children), and felt that their needs were appropriately considered and supported. Comments about appointment times were mixed; half the parents reported that EI was flexible in meeting families’ needs in this respect. M8 commented ‘they try and be as flexible with appointment
times as they can’. Where appointments were not offered outside school hours, parents felt that was problematic as children had to miss school to attend EI. Furthermore, having regular therapy sessions in school time was seen as a considerable disruption to school routines. Many parents (six) expressed satisfaction with the EI location, reporting that appointment venue was generally negotiable depending on their preferences and routines. M6 liked ‘flexibility around venues for appointments… therapists visited us at home because I had two children and was pregnant’. Two parents commented on accessibility of their EI centres, with mixed reports. However, the mother who expressed concerns regarding the distant location of the centre acknowledged that home visits were offered where possible.
Navigating the service system Some parents placed considerable value on the extent to which EI responded to their information needs. Of the four parents who commented on this issue, three expressed dissatisfaction with information quantity and quality. Parents frequently sourced information outside EI. Those with school-aged children generally obtained information from therapists, teachers and support staff at their child’s school. Where applicable, parents received information from hospital-based therapists, disability-specific services/supports (two parents), community health nurses, the government statutory agency Centrelink and personal contacts (one parent each). Regarding information on other available services and supports, many participants felt that they had to ‘learn the system’ themselves as relevant material often was not accessible. Most parents used the Internet and around half obtained information ‘via word of mouth’ through other parents (mostly mothers) they met informally at EI centres or their child’s school. A recurring comment was that parents needed to be proactive and ‘push for services’. Two parents commented on needing to remind EI staff to follow up on specific issues. Concerning service coordination, parents reported that various agencies tended not to liaise with each other or link services adequately. Particularly troubling to parents was the fact that communication between children’s schools and EI teams was often perceived as lacking. As a result of poor interagency collaboration, parents reported that they had to act as their own service coordinators rather than being able to rely on EI staff to do this. M1 said ‘organisations don’t communicate or interact with each other, parents have to do it’.
Theme 3: Managing their child’s needs and planning for the future This theme encompassed parents’ management of their child’s daily care needs, as well as planning for their child’s future, especially negotiating life transitions, such as starting school. © 2013 Occupational Therapy Australia
72
Providing daily support Overall, parents reported feeling mostly competent and confident in supporting their child. Some reported that while things had been particularly difficult (both emotionally and physically) early on, they had acquired practical and coping skills over the years. A mother of a child with high support needs said, ‘we are old hands – we have it pretty well down pat’. While parents tended to feel more capable as children aged, they faced additional challenges due to increasing physical needs of children, especially if children were not able to mobilise. Three parents reported having back problems secondary to lifting and transferring tasks. Furthermore, to maximise opportunities for mobilising, parents expressed reluctance to use equipment such as hoists. One mother said, ‘looking after (my son) is a balance between my physical limits and his physical abilities’ (M3). Further issues were identified around managing financial costs of raising a child with physical disabilities. Numerous parents stressed the additional expenses incurred for example, specialist appointments, equipment and home/vehicle modifications. One single mother said, ‘fundraising for big items for example, bathroom modifications is also needed. It’s not possible to cover the gaps in funding for those large items as it sometimes is with the smaller, less expensive ones’ (M10). Two mothers discussed workforce participation difficulties, commenting that they left paid employment to fulfil caring duties, significantly reducing their ability to manage financially. Quality of parents’ informal support networks was associated with parents feeling supported with practical aspects of their caring role. Seven parents reported that they would benefit from greater support from extended family, friends and/or local community. In some cases, even where families resided locally, their ability to provide support was limited, given competing family commitments and/or significant physical requirements associated with caring for children, for example, lifting and transferring. This latter issue was particularly relevant for grandparents. Feedback regarding community supports was mixed; however, even where parents encountered acceptance, they did not receive much assistance from community members.
Preparing for the future Apart from managing their child’s daily needs, parents discussed issues of preparedness, including anticipating transition events and addressing concerns regarding their child’s future. Parents felt that more could have been done in planning EI services, key life transitions and exiting EI, and stressed the importance of focusing on the future even when children are young. One mother felt ‘annual planning would be very good, being helped to make realistic goals for the next twelve
© 2013 Occupational Therapy Australia
J. ZIVIANI ET AL.
months. A bigger picture would be helpful, maybe therapists could discuss with us what the next steps are after achieving goals’ (M3). Issues regarding key transition points, particularly school entry were of prominence. Two parents commented that EI teams included a transition teacher and that therapy assisted with skill development, preparing their child for school. Other parents felt that they had insufficient information and support to assist them with decision-making around schooling options. Some parents highlighted needing information and assistance around subsequent key transition points, for example, commencing high school. M9, whose child had high support needs, highlighted a lack of ‘planning for the transitions from primary to high school and to adulthood’. Eight parents conveyed worries regarding exiting EI and many did not know how long they would be able to access services. One mother said, ‘I am not sure if we will just be cut off. I think we will get no support after (my daughter) turns nine…we haven’t really been given any information’ (M5). Other parents expressed more immediate concerns about reduction or loss of EI following school entry. Often, they did not have an understanding of how service provision would change as a result of this transition. A comment was made: ‘we were surprised to learn that starting school reduces access to the service. We were not prepared for the change and did not know what services the centre would continue to offer us’ (F2).
Discussion Facilitators The current study pointed to many positive perceptions of service delivery. Most participants conveyed satisfaction with their relationships with EI staff, and felt that therapy services were of high quality. Parents valued family support, which was seen as complementary to therapy, and central to FCP. Provision of family support improves satisfaction with EI programmes, and has positive effects on family health-related quality of life (Davis & Gavidia-Payne, 2009). Parents commented favourably on FCP, although felt that various family-centred behaviours occurred to differing extents. Brotherson and Goldstein (1992) found that parents had concerns regarding flexibility of EI, particularly timing of therapy and other appointments. Conversely, more than half our participants felt that appointments generally accommodated their routine.
Barriers and recommendations While commenting favourably on many aspects of EI, families also raised concerns, including frequency of therapy sessions. Amount of therapy is central to satisfaction with EI; often parents feel that their child requires more (Hiebert-Murphy, Trute & Wright, 2011; James & Chard, 2010). As with these previous reports, our parents
73
SERVICES FOR COMPLEX CHILDREN AND FAMILIES
attributed a lack of therapy to organisational constraints, for example, staff shortages, large caseloads and insufficient funds/resources. There is a need to establish clear guidelines for EI from the initial interaction with families (Vacca & Feinberg, 2000) so parents develop realistic expectations regarding levels of service provision. Equipment services were of the utmost importance to participants and this is consistent with what is known about the needs of families of children with physical disabilities (Clark & MacArthur, 2008) who often require greater access to funding for items such as wheelchairs and continence aids (Hinton, 2007). Funding is crucial when children have limited functional mobility and/or when families experience financial strain (Almasri et al., 2011). Overall, parents reported satisfaction with their relationships with EI staff; however, some felt that this was compromised by high staff turnover. The importance of building strong, collaborative partnerships with health professionals has been highlighted for children with chronic health conditions by Kratz, Uding, Trahms, Villareale and Kieckhefer (2009). In addition to issues of lost time, staff turnover can be concerning for parents when high-quality relationships have been forged with previous staff members (James & Chard, 2010). Parents in our study sought more information on their child’s disability and available services and supports. These comments are consistent with our other evaluation findings that parents who perceived provision of general information as being provided in a family-centred manner were more satisfied with services (Ziviani, Feeney & Khan, 2011a). Similar to the study by Palisano et al. (2010) on service needs of parents of children with cerebral palsy, the present study identified information needs about ‘services their child might receive in the future’, ‘services that are presently available’ and ‘planning for their child’s future well-being’. Parents often felt that various agencies with which they were involved communicated and coordinated services poorly, consistent with our broader study where parents reported relatively less satisfaction with service coordination and quality/availability of other community services (Ziviani, Cuskelly & Feeney, 2010). Other studies have found that parents are responsible for sourcing and coordinating different services they access for their child (James & Chard, 2010), highlighting the need for family-centred service coordination, which reduces families’ requirements for psychosocial support resources (Trute, Hiebert-Murphy & Wright, 2008).
Managing children’s needs and planning for the future The significant burdens placed on parents of children with physical disabilities have been highlighted previously. Mothers needed to ‘balance’ numerous competing demands, including family/home commitments, caring duties and engaging in EI (Thompson, 1998).
Families of children with physical disabilities often report greater disturbances to family life; this has been attributed to increased burden of care resulting from physical difficulties (Eddy & Engel, 2008). Larson (2010) found that parents’ ‘capacity to manage life demands’ and having supportive family relationships were key contributors to well-being. In this study, parents benefitted from support from family and friends (where available), or wanted more help (where this support was lacking). There are financial implications of raising a child with a disability (Thompson), and common issues were raised here, for example, private therapy costs and lost income. Children’s use of adaptive equipment (most common amongst children with physical disabilities) significantly impacts mothers’ decisions regarding workforce participation (Warfield, 2001). The importance of being informed about and prepared for the future, including key transition events, stressed by our parents, has also been reported for children with cerebral palsy and other disabilities (Hinton, 2007) and chronic health conditions (Kratz et al., 2009). There are potential long-term impacts of success in community and school transitions on children’s later academic and social achievement (Rous, Hallam, Harbin, McCormick & Jung, 2007). Evidence also points to the value of parents experiencing successful transitions as a mechanism to achieve greater self-efficacy as a carer and advocate (Guimond, Wilcox & Lamorey, 2008).
Impact of complex needs While it is reasonable to expect that participants would have additional difficulties accessing EI, often issues did not appear related to complexities of parents, their child and/or family. Primarily, feedback was consistent with more general EI studies. Thus, it appears families with complex needs may have similar expectations and service requirements to other families. This finding is supported by our broader evaluation, where the manner in which EI was delivered, rather than characteristics of children and families accessing services, determined parents’ satisfaction with EI (Ziviani et al., 2011a).
Limitations Some limitations should be acknowledged. First, findings were aggregated across EI programmes, which differ somewhat in terms of their client base, service delivery models and organisational characteristics. However, while programmes differed, the feedback provided by parents was fairly consistent. Second, the sample size (N = 10) represented only 55.6% of those invited to participate. This response rate is in keeping with that reported in other studies of EI for children with disabilities. These families often do not participate in research due to competing responsibilities and demands on their time. There are no concerns regarding representativeness of participants as they were purposefully sampled with the aim of understanding experiences of parents with © 2013 Occupational Therapy Australia
74 children/families with complex needs. Third, the small number of participants with some characteristics of interest makes it difficult to draw conclusions regarding the impact of those factors. Furthermore, we cannot fully understand ‘additional difficulties’ experienced by families with complex needs without some frame of comparison. Fourth, due to time constraints of the broader evaluation, interviews were conducted at a single time point, and so did not provide insights into how parents’ perceptions may change over time. Fifth, in qualitative studies, personal characteristics and backgrounds of investigators can potentially influence study methodology and theme identification. Introduction of bias was minimised through use of researchers from numerous disciplinary backgrounds, audio recordings and member checking (Padgett, 2008). Future research could extend upon the work presented here by examining these issues with a small sample of families from more privileged backgrounds and tracking change over time through prolonged engagement with families.
Conclusion This study enhances our understanding of how families with complex needs regard EI, the extent to which programmes meet their expectations, and barriers to access. Parents identified numerous positive aspects of EI, but also highlighted issues with service provision. Also, while most families reported that they were happy with the parent–provider relationship, they also reported that this relationship was affected by high staff turnover. Parents expressed further concerns regarding the frequency of therapy appointments, and felt that the relatively low level of service provision adversely impacted the quality of communication between providers and themselves. Various parent-led suggestions were provided. Most importantly, participants stressed the need for unambiguous information on the amount and type of services offered and length of time EI could be accessed to be provided from the outset. Generally, feedback regarding experiences of accessing EI did not appear related to particular attributes of parents or their child. However, two characteristics seemingly influenced parents’ perceptions of managing their child’s needs and planning for the future, namely parents with health problems and single mothers.
Acknowledgements The authors thank the Department of Communities, Child Safety and Disability Services for their financial support to this project.
References Almasri, N., Palisano, R. J., Dunst, C., Chiarello, L. A., O’Neil, M. E. & Polansky, M. (2011). Profiles of family
© 2013 Occupational Therapy Australia
J. ZIVIANI ET AL.
needs of children and youth with cerebral palsy. Child: Care, Health and Development, 38 (6), 798–806. Anderson, R. (2007). Thematic content analysis (TCA): Descriptive presentation of qualitative data. Retrieved 1 September, 2012, from http://www.wellknowingconsulting.org/publications/pdfs/ThematicContentAnalysis.pdf Bailey, D. B., Skinner, D., Correa, V., Arcia, E., Reyes-Blanes, M. E., Rodriguez, P. et al. (1999). Needs and supports reported by Latino families of young children with developmental disabilities. American Journal on Mental Retardation, 104 (5), 437–451. Balcazar, F. E., Suarez-Balcazar, Y., Taylor-Ritzler, T. & Keys, C. B. (2009). Race, culture and disability: rehabilitation science and practice. Boston: Jones and Bartlett. Brotherson, M. J. & Goldstein, B. L. (1992). Time as a resource and constraint for parents of young children with disabilities: Implications for early intervention services. Topics in Early Childhood Special Education, 12 (4), 508–527. Clark, P. & MacArthur, J. (2008). Children with physical disability: Gaps in service provision, problems joining in. Journal of Paediatrics and Child Health, 44, 455–458. Darling, S. M. & Gallagher, P. A. (2004). Needs of and supports for African American and European American caregivers of young children with special needs in urban and rural settings. Topics in Early Childhood Special Education, 24 (2), 98–109. Davis, K. & Gavidia-Payne, S. (2009). The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities. Journal of Intellectual and Developmental Disability, 34 (2), 153–162. DiGiacomo, M., Davidson, P. M., Abbott, P., Delaney, P., Dharmendra, T., McGrath, S. J. et al. (2013). Childhood disability in Aboriginal and Torres Strait Islander peoples: A literature review. International Journal for Equity in Health, 12 (1), 7. Eddy, L. L. & Engel, J. M. (2008). The impact of child disability type on the family. Rehabilitation Nursing, 33 (3), 98–103. Garcia, S. B., Mendez-Perez, A. & Ortiz, A. A. (2000). Mexican American mothers’ beliefs about disabilities: Implications for early childhood intervention. Remedial and Special Education, 21, 90–100. Guimond, A. B., Wilcox, M. J. & Lamorey, S. G. (2008). The early intervention parenting self-efficacy scale (EIPSES): Scale construction and initial psychometric evidence. Journal of Early Intervention, 30 (4), 295–320. Hebbeler, K., Spiker, D., Mallik, S., Scarborough, A. & Simeonsson, R. J. (2003). The National Early Intervention Longitudinal Study. Demographic characteristics of children and families entering early intervention. NEILS Data Report 3. Menlo Park, CA: SRI International. Hiebert-Murphy, D., Trute, B. & Wright, A. (2011). Parents’ definition of effective child disability support services: Implications for implementing family-centered practice. Journal of Family Social Work, 14, 144–158. Hinton, T. (2007). Forgotten families: Raising children with disabilities in Tasmania. Tasmania: Anglicare Tasmania Incorporated. James, C. & Chard, G. (2010). A qualitative study of parental experiences of participation and partnership in an
75
SERVICES FOR COMPLEX CHILDREN AND FAMILIES
early intervention service. Infants and Young Children, 23 (4), 275–285. Johnson, K. & Theberge, S. (2007). Reducing disparities beginning in early childhood, National Center for Children in Poverty. Retrieved 2 September, 2012, from http://www.nccp.org/publications/pub_744.html Kochanek, T. T. & Buka, S. L. (1998). Influential factors in the utilization of early intervention services. Journal of Early Intervention, 21 (4), 323–338. Kratz, L., Uding, N., Trahms, C. M., Villareale, N. & Kieckhefer, G. M. (2009). Managing childhood chronic illness: Parent perspectives and implications for parent-provider relationships. Families, Systems and Health, 27 (4), 303–313. Larson, E. (2010). Identifying indicators of well-being for caregivers of children with disabilities. Occupational Therapy International, 17 (1), 29–39. Nolan, K. W., Young, E. C., Herbert, E. B. & Wilding, G. E. (2005). Service coordination for children with complex healthcare needs in an early intervention program. Infants and Young Children, 18 (2), 161–170. Padgett, D. K. (2008). Qualitative methods in social work research. Los Angeles, California: Sage. doi: 10.4135/ 9781412963909.n7 Palisano, R. J., Almarsi, N., Chiarello, L. A., Orlin, M. N., Bagley, A. & Maggs, J. (2010). Family needs of parents of children and youth with cerebral palsy. Child: Care, Health and Development, 36 (1), 85–92. Patton, M. (2002). Qualitative research and evaluation methods. California: Sage Publications. Ridgley, R. & Hallam, R. (2006). Examining the IFSPs of rural, low-income families: Are they reflective of family concerns? Journal of Research, 21, 149–162. Rous, B., Hallam, R., Harbin, G., McCormick, K. & Jung, L. A. (2007). The transition process for young children with disabilities: A conceptual framework. Infants and Young Children, 20 (2), 135–148. Stewart, M. (2012). Experiences of families living in rural and remote British Columbia with a child with a disability or developmental delay. Unpublished doctoral dissertation. Vancouver: The University of British Columbia. Thompson, K. M. (1998). Early intervention services in daily family life: Mothers’ perceptions of ‘ideal’ versus ‘actual’ service provision. Occupational Therapy International, 5 (3), 206–221. Tomasello, N. M., Manning, A. R. & Dulmus, C. N. (2010). Family-centred early intervention for infants and toddlers with disabilities. Journal of Family Social Work, 13, 163–172. Trute, B., Hiebert-Murphy, D. & Wright, A. (2008). Family-centred service coordination in childhood health and disability services: The search for meaningful service outcome measures. Child: Care, Health and Development, 34 (3), 367–372. Unger, D., Jones, C. & Park, E. (2001). Promoting involvement between low-income single caregivers and urban early intervention programs. Topics in Early Childhood Special Education, 12 (4), 195–210. Vacca, J. & Feinberg, E. (2000). Why can’t families be more like us? Henry Higgins confronts Eliza Doolittle in the world of early intervention. Infants and Young Children, 13 (1), 40–48.
Warfield, M. E. (2001). Employment, parenting, and well-being among mothers of children with disabilities. Mental Retardation, 39 (4), 297–309. Ziviani, J., Cuskelly, M. & Feeney, R. (2010). Parent satisfaction with early intervention services for children with physical disabilities: Internal consistency of the European Parent Satisfaction Scale about Early Intervention. Infants and Young Children, 23 (3), 184–194. Ziviani, J., Feeney, R. & Khan, A. (2011a). Early intervention services for children with physical disabilities: Parents’ perceptions of family-centredness and service satisfaction. Infants and Young Children, 24 (4), 1. Ziviani, J., Feeney, R., Rodger, S., Watter, P., Brown, R., Head, B. et al. (2011b). Primary research on early intervention services for children with a physical disability: Final Report to Department of Communities (Disability and Community Care Services). Brisbane, Queensland: The University of Queensland.
Appendix 1 Qualitative Interviews Guide 1. Tell me about the services that you and your family are currently receiving from (service provider organisation). 2. Are you receiving services from other organisations? 3. Can you tell me when these services commenced and how regularly you receive them? 4. What do you like about the early intervention services you receive? 5. What do you not like about the early intervention services you receive? 6. Are there any changes that you would suggest about how these services are provided? 7. What is your understanding of who can access early intervention services from (service provider organisation) and at what point families may leave the service? 8. What are your ideal expectations in terms of the support you and your family receive from the early intervention service? 9. Can you tell me about any difficulties you have experienced in getting these early intervention services? 10. Can you explain how and where you access these services and if the way they are offered fits in with your family situation? 11. How do you get information that can help you in managing your child’s and family’s needs? 12. How would you describe the relationship you have with early intervention staff? 13. Can you think of anything that you need help with that is not currently being provided by (service provider organisation) or other organisations)? 14. Do you have any concerns for the future, for example, once you leave the early intervention service? 15. Is there anything else you would like me to know about the way you access services for your child? Within each broader question, targeted probing questions were used to elicit further information. © 2013 Occupational Therapy Australia
