https://orcid.org/0000-0001-7001-8976
ABSTRACT
Background:
Future planning is a way of supporting people with intellectual disabilities and their families to think about their support needs as both groups age. Adults with intellectual disabilities, family members, and service providers are often involved in planning processes. However, it is unclear whose perspectives dominate in the literature and how these might vary.
Method:
A scoping review of qualitative studies (2012–2022) was undertaken to identify which perspectives are present in research on adults with intellectual disabilities and future planning, and to examine key aspects of their future planning experience.
Results:
The perspectives of parents and siblings predominate in the research. Those of adults with intellectual disabilities and service providers are underrepresented.
Conclusions:
The views of adults with intellectual disabilities need to be elevated in future planning and they need to be meaningfully involved in planning processes. Focus on the experiences of service providers is likewise needed.
Due to improvements in education, health, and social care people with intellectual disabilities are now living a lifespan more like the general population (Reppermund et al., Citation2020). In Australia and globally, a significant number of people with disabilities live in the family home (Australian Institute of Health and Welfare [AIHW], Citation2011; United Nations [UN], Citation2017). Consequently, life-long family caregivers are increasing, and many remain concerned about the continuity of caregiving as they age (Brennan et al., Citation2020). The concept of future planning – making plans for post-parental or family caregiving – has been promoted in the research literature as one approach to finding solutions to the issues of future care (Brennan et al., Citation2018; Deville et al., Citation2019; Hole et al., Citation2013; Leane, Citation2020; Lee et al., Citation2019; Lee & Burke, Citation2021; Lindahl et al., Citation2019; McCausland et al., Citation2019; Strnadová, Citation2019; Taggart et al., Citation2012; Thakkar, Citation2018; Walker & Hutchinson, Citation2019).
This future planning literature is now decades old (Bigby, Citation1996), and in the past 15 years, five reviews have been undertaken of this body of work (Bibby, Citation2012; Brennan et al., Citation2020; Lee & Burke, Citation2020; Ryan et al., Citation2014; Walker & Hutchinson, Citation2018). The reviews have provided a synthesis of the main research findings and highlighted issues of methodological rigour. Some barriers and enablers of planning are well-documented, like the benefits of planning early (Ryan et al., Citation2014) and the difficulty many families face in broaching the issue of future caregiving (Bibby, Citation2012). Additionally, the lack of high-quality longitudinal and intervention studies about future planning has been documented (Brennan et al., Citation2020; Lee & Burke, Citation2020). However, no review has sought to understand which stakeholders are present in these studies and in what ways. This is significant, given that future planning is known to involve various people with different roles, particularly parents, siblings, and adults with intellectual disabilities whose perspectives may not necessarily align (Lee et al., Citation2019). Moreover, the rights approach to disability and the emphasis on choice and control in Australia and internationally create a strong imperative for future planning to be led by the preferences of adults with intellectual disabilities rather than family members (National Disability Insurance Agency [NDIA], Citation2023; UN, Citation2006). The choice is fundamental to self-determination and quality of life. However, research demonstrates that individuals with intellectual disabilities experience fewer choices and often have choices made for them (Stancliffe, Citation2020). This scoping review examines qualitative, peer-reviewed studies about future planning for adults with intellectual disabilities and the different perspectives represented in these.
Objectives
This scoping review of the qualitative, peer-reviewed literature about adults with intellectual disabilities and future planning aimed to identify whose perspectives are represented and to what extent, and to highlight key aspects of the future planning experiences of the different groups involved. The research question was: which stakeholders have been involved in peer-reviewed studies about future planning processes and which dominate, and how does each group experience future planning? We conducted the scoping review utilising the PRISMA Extension for Scoping Reviews (PRISMA-ScR) checklist (Tricco et al., Citation2018). While a systematic review is appropriate for answering clinically based questions, or in identifying implications for practice, scoping reviews are well-suited to exploratory research questions, which map the available evidence in a particular area and/or identify gaps in knowledge (Munn et al., Citation2018).
Methods
Identifying relevant studies
Eligibility criteria, information sources, and search strategy
The inclusion criteria were that articles were published in the past 10 years and in English; qualitative or mixed methods, where the qualitative component, including its participants, were identified, and reported on separately from the quantitative findings; and focused on future planning for adults (18+) with intellectual disabilities as the biggest group. Ten years is considered standard practice for reviews (Peters et al., Citation2020) and qualitative findings were chosen because the review focusses on examining people’s experiences (Roller & Lavrakas, Citation2015). Future planning could be concrete or aspirational, with its main purpose being “to ensure supports are available” for adults with intellectual disabilities in the future (Burke et al., Citation2018, p. 90). Studies were excluded if other disabilities were the focus, we were unable to determine the types of disabilities, or quantify the number of individuals with intellectual disabilities. The peer-reviewed literature on future planning is now decades old, and while numerous reviews have been conducted, none have sought to map the perspectives represented in this specific body of research. Given this focus, grey literature was deemed outside the review aims (Tricco et al., Citation2018).
A research librarian assisted the first author with identifying data sources and mapping search strategies. Four databases were chosen and searched between October and November 2022. These were: Medline, CINAHL, Web of Science, and ProQuest. Databases were searched using a combination of MeSH, subject headings, and key words, depending on the database. Filters were also applied. Unique search strategies were piloted and then refined for each database (Arksey & O’Malley, Citation2005). The details of the CINAHL database search are in Table A1, Appendix A.
Key journals containing multiple studies on adults with disabilities and future planning were hand searched (Arksey & O’Malley, Citation2005). They were: Journal of Applied Research in Intellectual Disabilities, British Journal of Learning Disabilities, Journal of Intellectual and Developmental Disability, Journal of Policy and Practice in Intellectual Disabilities, Journal of Intellectual Disabilities, Disability and Society, Intellectual and Developmental Disabilities. The reference lists of studies selected for full-text reading were also hand searched (Arksey & O’Malley, Citation2005).
Selection of sources of evidence
PRISMA guidelines were used to create a study selection flow chart, which outlines the selection process (Page et al., Citation2021) and is reported in . Article titles and abstracts were initially screened and assessed according to inclusion and exclusion criteria. A three-step selection process then followed:
A thorough reading of abstracts was undertaken, and studies were excluded if future planning was not the focus.
The full text of selected studies was then read and articles were excluded if intellectual disabilities were not the majority disability; or if we were unable to ascertain this from the article. This was determined by examining the different represented disabilities and identifying which was the largest relative group.
The final articles selected focused on future planning and had the largest relative number adults (18+) with intellectual disabilities.
Figure 1. Study selection flowchart with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) (Page et al., Citation2021).
A form to guide the selection of sources was developed by the first two authors using Microsoft Excel and included relevant study information, such as author(s), year of publication, title and journal information, inclusion criteria and rationale for inclusion or exclusion. These same authors undertook each step of the selection process independently. After each step, they reconvened to discuss the results and any discrepancies, including discussing the suitability of the form, which did not need to be modified. Discussion continued until consensus was reached. The Cohen’s kappa inter-rater agreement for abstract screening was 0.94 and for full-text screening was 0.86.
Data charting process and synthesis of results
A data charting table was created in Excel based on the recommendations by Peters et al. (Citation2020) and following discussion by the first two authors regarding the study aims. The table included key information about the articles and studies, such as aims/objectives; methods, including whether inclusive research practices were employed; key participant characteristics; and the main experiences of future planning identified in each study, organised by perspective, namely adults with intellectual disabilities, siblings, parents, and service providers. Only information reported by participants regarding their own experiences was used to represent their perspective. For example, where a sibling may have spoken about their view of a parent’s experience, this was not included as part of the parental voice. Where findings from parents and siblings were reported together, these were charted as both siblings’ and parents’ views. However, where it was indicated that a certain view was only held by siblings or only by parents these were charted separately. The same two authors who undertook study selection, engaged in data extraction and synthesis, following the same process for both stages. Namely the authors completed the data extraction and synthesis independently. Once this was completed, they met to discuss their findings. Discussion continued until consensus was reached. and contain the results of the data charting process, including the characteristics of sources of evidence, and includes the evidence synthesis.
Table 1. Study and article characteristics.
Table 2. Synthesis of experiences of future planning according to perspective.
Given that the authors chose tabular and narrative formats to present the evidence synthesis, after the initial charting was undertaken, the future planning experiences identified for each group in each study were examined again. The first author reviewed these multiple times, and key experiences were identified. These were chosen because they underscored commonalities in relation to future planning across groups while highlighting unique elements of each stakeholder experience. Once key findings had been noted by the first author, these were discussed with the second author and discussion continued until consensus was reached on all identified findings.
Results
The discussion below compares future planning experiences and is organised according to prevalence of the participant group, beginning with parents, siblings, adults with intellectual disabilities, and lastly service providers.
Parents and siblings
Eleven studies included parents as participants and reported issues from their perspectives (Brennan et al., Citation2018; Covelli et al., Citation2018; Deville et al., Citation2019; Hole et al., Citation2013; Lee et al., Citation2019; Lindahl et al., Citation2019; McCausland et al., Citation2019; Taggart et al., Citation2012; Thakkar, Citation2018; Walker & Hutchinson, Citation2019; Wilson et al., Citation2021). Most parents were mothers and were between 43 and 89 years old (see ). Ten articles included siblings as participants and described their experiences of planning (Brennan et al., Citation2018; Covelli et al., Citation2018; Davys et al., Citation2015; Hole et al., Citation2013; Leane, Citation2020; Lee et al., Citation2019; Lee & Burke, Citation2021; Lindahl et al., Citation2019; McCausland et al., Citation2019; Taggart et al., Citation2012). Most sibling participants were sisters and were between 18 and 69 years old (see ).
Table 3. Key demographic characteristics of study participants (qualitative component)*.
Concerns about the future care of their family member with intellectual disabilities remain prevalent for parents and siblings (Brennan et al., Citation2018; Covelli et al., Citation2018; Hole et al., Citation2013; Leane, Citation2020; Taggart et al., Citation2012) and, for siblings, this extended to the potential caregiving responsibilities of their own children (Brennan et al., Citation2018; Leane, Citation2020). There is a lack of concrete future planning among parents and siblings (Davys et al., Citation2015; Deville et al., Citation2019; Hole et al., Citation2013; Walker & Hutchinson, Citation2019) with a limited number of studies suggesting there is variation in the extent of planning among families (Taggart et al., Citation2012; Thakkar, Citation2018). Importantly, parents (Brennan et al., Citation2018; Deville et al., Citation2019; Hole et al., Citation2013; Taggart et al., Citation2012; Wilson et al., Citation2021) were more likely than siblings (Brennan et al., Citation2018; Davys et al., Citation2015; Hole et al., Citation2013) to express concern about the impact on current plans of future changes either in the support needs of the adult with intellectual or in the wider policy and services environments. This concern may also be reflected in parents viewing appointing a caregiving successor as more important (Deville et al., Citation2019; Lindahl et al., Citation2019; Thakkar, Citation2018) than siblings (Lindahl et al., Citation2019). Finally, the number of siblings in a family also impacts future planning practices with multiple siblings creating additional complexity around future caregiving (Brennan et al., Citation2018; Hole et al., Citation2013; Leane, Citation2020).
Adults with intellectual disabilities
Three articles included adults with intellectual disabilities and described their perspectives on future planning (Hole et al., Citation2013; McCausland et al., Citation2019; Strnadová, Citation2019). Adults with intellectual disabilities were aged between 30 and 69 years old, there were more females than males, and those with more complex communication and support needs were not represented (see ). Only one study used inclusive research practices (Hole et al., Citation2013).
Similarly to parents and siblings, adults with intellectual disabilities reported being concerned about the future (Hole et al., Citation2013; McCausland et al., Citation2019; Strnadová, Citation2019) but with a different focus, with discussion centring on ageing parents, experiencing loneliness (Hole et al., Citation2013), and changes in relationship networks over time (Strnadová, Citation2019). This group also engaged in little future planning (Hole et al., Citation2013; Strnadová, Citation2019) and like parents and siblings identified housing as a priority area (Hole et al., Citation2013; McCausland et al., Citation2019; Strnadová, Citation2019). McCausland et al.’s (Citation2019) intervention study was the only one of the three intervention studies in the review that included adults with intellectual disabilities. The authors found that person-centred practices were challenged when the future planning goals articulated by adults with intellectual disabilities could not be met. In these cases, family and/or service providers tended to explore alternatives without input from the adult with intellectual disabilities (McCausland et al., Citation2019).
Service providers
Three studies involved service providers (Covelli et al., Citation2018; McCausland et al., Citation2019; Thakkar, Citation2018), and none of these focused exclusively on the experiences of this group. Only Covelli et al. (Citation2018) reported on their views directly, albeit in a limited fashion. The service providers in Covelli et al.’s (Citation2018) study were mainly female and aged between 38 and 64 years (see ). They reported a unique perspective on future caregiving. They identified a perceived reduction in independence in adults with intellectual disabilities who had been institutionalised. Further, they highlighted the importance of maintaining continuity of routine and minimising sudden changes for the health and well-being of this cohort.
Discussion
As has been articulated in previous research and confirmed in this review, adults with intellectual disabilities remain underrepresented in the research literature and those with more complex support and communication needs are absent as participants. This finding points to a significant gap in the current understanding of the future planning and caregiving needs of an important population. A better understanding of these considerations will support the development of person-centred, rights-based interventions. Further, there is limited use of inclusive research approaches. Again, this is an area that requires attention, given the centrality and importance of the “Nothing about us without us” disability rights movement and its emphasis on inclusive research practices (O’Brien et al., Citation2022).
Brennan et al. (Citation2018), Hole et al. (Citation2013), and Leane (Citation2020) all highlight that the number of siblings in a family can impact future planning practices. These findings are not new and were highlighted by both Davys et al. (Citation2011) and Burke et al.’s (Citation2018) reviews. The issue of multiple siblings in a family and its connection to future planning suggests that a greater focus on the family as a system, and concepts such as family quality of life may be beneficial in future planning research and interventions (Zuna et al., Citation2010)
A particular aspect of future planning for parents is nominating a caregiving successor(s). The difficulty in doing this, for example, because of family dynamics, can impede the planning process (Deville et al., Citation2019; Lee et al., Citation2019; Lindahl et al., Citation2019; Thakkar, Citation2018). Further, parents in particular reported concerns about not being able to plan for contingencies and changes in circumstance, such as increased support needs (Davys et al., Citation2015; Deville et al., Citation2019; Hole et al., Citation2013; Taggart et al., Citation2012; Wilson et al., Citation2021). Additionally, there remains a lack of concrete future planning generally, despite evidence suggesting that it is important in ensuring adult with intellectual disabilities’ support into the future (Brennan et al., Citation2018; Deville et al., Citation2019; Taggart et al., Citation2012; Walker & Hutchinson, Citation2019). These findings suggest that the concept of future planning itself may require further examination. This assertion is not new. Indeed, a greater focus on supporting the identification of a caregiving successor(s) in families has already been identified as a way of addressing some of the limitations of more traditional approaches to future planning, such as a lack of flexibility (Bibby, Citation2012; Bigby, Citation2000; Ryan et al., Citation2014; Taggart et al., Citation2012).
The lack of inclusion of service providers as participants is a significant finding. For people without family support, paid services are often the only source of assistance for future planning and their key role in future planning practices for families has already been noted by Bibby (Citation2012). Interestingly, Walker and Hutchinson (Citation2019) indicate that among the adults with intellectual disabilities living out of home in their study, none were approached by service providers to engage in future planning activities. Given the important role of service providers and the lack of evidence regarding their experiences of future planning, additional research with these stakeholders is of pressing concern.
Strengths and limitations
The current scoping review provides important insights into the different perspectives currently represented in the peer-reviewed, qualitative literature on future planning. It particularly highlights the lack of representation of adults with intellectual disabilities and more specifically the total absence of those with more complex support and communication needs as participants. The scope of the current review was narrow, excluding quantitative studies, reviews, and grey literature. Additionally, in only choosing articles with future planning as the focus, studies that included this as a small part of larger discussions around future caregiving were excluded.
Conclusion
The qualitative literature on adults with intellectual disabilities and future planning continues to evolve. However, there are several long-standing issues that are yet to be addressed, including the lack of meaningful inclusion of adults with intellectual disabilities, the absence of individuals with complex communication and support needs, and limited engagement with inclusive research practices. Further, despite some evidence that suggests that paid services are important in future planning practices, this perspective remains virtually absent. Moreover, calls to critically examine the concept of future planning have gone unanswered with a consequent lack of reflexivity in the literature and an absence of alternatives for adults with intellectual disabilities and their families to consider. These findings suggest a clear way forward for the research literature regarding future planning, with a greater focus on inclusivity and reflexivity and more attention to the nuanced experiences of the different stakeholders involved in future planning activities.
Disclosure statement
No potential conflict of interest was reported by the authors.
Additional information
Funding
References
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Appendix
Table A1. Search strategy for CINAHL.