Parents with intellectual disabilities

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 Method

A systematic literature review is used to identify, evaluate and integrate the findings of the different articles. This method is a comprehensive study of literature covering a particular area or topic (Aveyard, 2010). The goal is to identify, critically evaluate and integrate data of relevant studies regarding a specific aim as well as matching research questions (Baumeister & Leary, 1997; Cohen, Manion, & Morrison, 2011). The review is objective, transparent and replicable, hence a detailed description of the search procedure, data collection, and analysis in the following.

Search procedure

For the article collection, five databases related to education and health were selected. Those were ERIC, SAGE, ScienceDirect, Taylor & Francis and Wiley. The following search terms were used in varying combinations depending on the respective databases; (Intellectual Disability OR Mental Retardation) AND (Parents with Disabilities AND Parenting) AND (Support OR Therapy) AND (Child OR Children OR Youth). The searches were conducted on March 10th, 2018.
The search strategy was adapted to the different databases, using thesaurus terms and free term search strategies, as well as title, abstract or keyword searches. The table with exact search terms for each database can be found in the appendix (Appendix A, Table 9.1) and Figure 4.1 illustrates a flowchart of the selection process.

Selection criteria

A variety of inclusion and exclusion criteria was developed to select the articles in accordance with the aim and research questions of the thesis. Relevant articles were chosen based on formal criteria (i.e. type of publication, year of publication) and subject-related criteria (i.e. participants, focus). Table 4.1 illustrates the exact inclusion and exclusion criteria.
The choice to only use English literature is justified by it being the common language of the author and the university, hence enabling higher transparency. The time range (2010 to 2018) is chosen to analyse the current situation and eliminate outdated facts, considering the ratification and the inception of the convention on the rights of persons with disabilities (CRPD) by most countries as the start of this review. The studies are from the western culture, so as to provide an insight and possibility to adapt the results in other countries with similar resources and general values (Huntington, 1996). The choice is also based on the author’s context and possible future implications. The focus is implied in the aim and the study design is open as to find a maximum of eligible data.

Selection process

A total of 123 articles was found using different search terms and the publication date limitation in the five databases (Appendix A, Table 9.1). To facilitate the search process, the Covidence software was used as an online screening tool for systematic literature review (Babineau, 2014). It facilitated the identification of duplicates, as well as the screening of titles and abstracts. In this procedure, fourteen articles were eliminated as they were duplicates. A summarised overview of the selection process can be found in Figure 4.1.
Moreover, articles from previous reviews on this topic have already been identified for the background beforehand. They have then been hand searched for further articles, but none of those adhered to the inclusion criteria.

Title and abstract

The 109 remaining articles were screened for Title and Abstract to find articles related to the aim. This procedure enabled a disposition of 87 more articles due to the exclusion criteria (Table 4.1). Most articles were removed, as they did not involve parents with intellectual disabilities, but children or as they focused on child neglect by parents with intellectual disabilities instead of parenting support strategies.

Full-text

The remaining 22 articles underwent full-text screening. One article was added by hand searching as multiple articles referenced it. In this step, six articles were eliminated for not fully adhering to the inclusion criteria (i.e. Study Design, Country conducted in, Focus).
The 17 final articles were further assessed regarding their quality. Low-quality articles were removed, resulting in twelve articles to be analysed. Nine out of these are qualitative studies using direct implementation of support strategies as home-based interventions or interviews, and three are mixed studies, implementing questionnaires (see Table 4.2). In general, there is not a lot of recent research based on parenting support strategies for parents with intellectual disabilities, thus all methods were included in the data analysis to gain a broader insight.

Quality assessment

To evaluate the quality of the articles, a quality assessment tool was created based on the Critical Review Form for Qualitative Studies (Letts, Wilkins, Law, Stewart, Bosch, & Westmorland, 2007), the CASP Qualitative Checklist (Critical Appraisal Skills Programme, 2018) and the Quantitative Research Assessment Tool (Child Care and Early Education Research Connection, 2013) to address all three types of study design. The questions and ratings of the tools are not modified, solely combined into one quality assessment tool.
The full version of the combined quality assessment tool can be found in the appendix (Appendix B, Table 9.2). The highest score on the quality assessment is 16 points or 100%. An article is assigned high quality when it is equal to or above 75% (≥12/16 points). An article is assigned medium quality when it is equal to or between 50 and 75% (8-11/16 points) and anything below 50% (<8/16 points) of the score is low quality. To guarantee quality awareness, the low-quality articles were not used in the results section.
Out of the 17 full-text approved articles, five are excluded due to low quality. This leads to 12 articles to be included in the results section; out of which, five are of medium quality and seven are of high quality.
To further ensure quality in this study, the verification, regrouping reliability, validity, and generalisability from the data of the literature review take place at all different stages of the research procedure. Hence, all the factors become intertwined (Cohen et al., 2011). Granheim and Lundman (2003) also include the importance of “credibility, dependability and transferability” (p.109). By choosing articles from different backgrounds and of different actors’ perspectives, various insights on the aim are gained and a higher degree of credibility is ensured.

Description of included articles

Out of an initial number of 123 articles gathered through a systematic search on the five databases, 12 articles fit both the inclusion criteria and quality assessment. The articles were included if they met all the inclusion criteria and demonstrated high or medium quality. The list of included articles, referred to by numbers in the following, can be found in Table 4.2.
Seven high quality articles (2; 3; 4; 7; 10; 11; 12) and five medium quality articles (1; 5; 6; 8; 9) are referred to in this results section. Four articles and their respective studies are from the USA (1; 2; 3; 8), while the others are from Europe (Belgium [4], Netherlands [5; 6; 7] & Sweden [9; 10; 11; 12]). Chengappa, McNeil, Norman, Quetsch, and Travers (2017), together with McHugh and Starke (2015) and Glazemakers and Deboutte (2012) use mixed approaches. The remaining 9 articles all use qualitative methods. The review does not include any quantitative study.
The definition of parents with intellectual disabilities eligible for the parenting support was mostly a low IQ (in general at least below 80) (5; 1; 2), but also learning disabilities (1; 4), lower adaptive functioning (6; 9), and social barriers to inclusion (9; 10; 11) were used in the target group criteria.
Parenting skills, as seen in the articles, are related to internal capacities to learn from the environment and prior experiences, respecting their environmental and social resources (1). It is a complex, but also rewarding activity (6). Parenting is a dynamic responsibility with shifting demands and expectations of skills (10). Autonomy, flexibility, and reflexivity are modern attributes to it (8). PID are often depicted as lacking parenting skills and having low confidence regarding their parenting style, making them vulnerable to prejudices by society (11). This frequently results in the removal of the children instead of effective parenting support strategies (1).
A full description of the articles and their content is assembled in a data extraction protocol, the layout of which can be found in Appendix C, Table 9.3. The characteristics of the article, information on the method and data collection, as well as participants, are retrieved by this tool. Additionally, definitions of essential terms are collected. In this data extraction, the parenting support strategies are identified within a structured analysis matrix and mapped onto Dunst and Trivette’s (1997) sources of support within the resource-based model. The support strategies for parenting skills are divided into their description, the accessibility (measured through proximity, affordability, and the number of admitted participants), the success (measured or observed improvement of the targeted parenting skills in the articles), as well as the perspectives and opinions of PID and support workers. The limitations, quality, and inclusion or exclusion criteria are mapped out in the end.

Data analysis

The research aim guides the choice of contents and the whole process of the data analysis (Robson, 1993). The data analysis is processed through a deductive qualitative content analysis to delineate the units of general meaning relevant to the aim (Hycner, 1985). The units of general meaning are condensed into codes, which emerge from categories and sub-categories. The data analysis is manifest and not latent, as to not misinterpret meanings, but focus on the surface structure (Catanzaro, 1988).
A deductive content analysis is based on previous knowledge, such as a theoretical framework, moving from the general to the specific categorisation (Burns & Grove, 2005). The benefits of deductive versus inductive qualitative content analysis are higher reliability, higher trustworthiness, the possibility to explain causal relationships and generalise the findings to a higher extent (Catanzaro, 1988; Elo & Kyngäs, 2008). The analysis consists of a preparation phase involving the selection of the unit of analysis and making sense of the data as a whole. This leads to the organising phase, in which a categorisation matrix (structured analysis matrix) is developed. The structured analysis matrix implies only features, which correspond to the categories, unlike the unconstrained matrix. The next step is the review and coding of the data within all the included articles, meaning the data is coded in correspondence to the categorisation matrix. Finally, the results are reported within their categories and conceptual system (Elo & Kyngäs, 2008). The category list is thus elaborated before the analysing process, such that the data analysis can be based on the existing codes (Bengtsson, 2016).
The categories of this data analysis are based on Dunst and Trivette’s (1997) sources of support in the resource-based approach model to answer the aim.

Ethical issues

The conduct of a literature review must be done with respect to ethical issues. The Committee on Publication Ethics (COPE, 2010) offers an appropriate guidance on this topic. The righteous referencing style is important to acknowledge the contributors of the articles. Moreover, accuracy must be ensured through meticulous data extraction. Finally, the review cannot be a duplicate of a similar review or involve plagiarism in any way (Higgins & Green, 2008; Wager & Wiffen, 2011).
The five ethical principles (American Psychological Association, 2002) were addressed in both the articles used and this literature review. They were assured through meticulous analysis. The beneficence and non-maleficence are guaranteed by protecting the rights and welfare of the participants, respectively the authors of the chosen articles. Fidelity and responsibility are enabled through upholding professional standards of conduct. The integrity is upheld by truthfulness and accuracy, which is meant to ensure there is no misrepresentation of facts. The explanation of limitations and potential biases enables justice within the paper. Finally, the respect for people’s rights and dignity is found throughout the articles and literature review. It is included in the selection of participants and through the elimination of prejudices to the author’s best extent (Hanson & Kerkhoff, 2011).
The author has an individual pre-understanding of support strategies within educational settings through the background of being a teacher. The master course gives the author further access to knowledge regarding support, interventions and intellectual disabilities. At the same time, a previous knowledge of intellectual disabilities is provided through the bachelor thesis, which treated that topic within children. The concept of parenting or being a parent is scientifically seen new to the author and information was previously only available through informal connections, such as family and friends. The combined topic of parents with intellectual disabilities can hence be approached objectively.

Table of contents
1 Introduction
2 Background
2.1 Intellectual disabilities
2.2 Parents with intellectual disabilities
2.3 Parenting skills
2.4 Risks and consequences
2.5 Support strategies
2.6 Theoretical framework
2.7 Previous reviews
2.8 Rationale
3 Aim and research questions
4 Method
4.1 Search procedure
4.2 Selection criteria
4.3 Selection process
4.4 Quality assessment
4.5 Description of included articles
4.6 Data analysis
4.7 Ethical issues
5 Results
5.1 Identified support strategies
5.2 Mapping onto Dunst and Trivette’s (1997) resource-based model
5.3 Accessibility of identified support strategies
5.4 Success of identified support strategies
6 Discussion 
6.1 Discussion of results
6.2 Discussion related to previous reviews
6.3 Discussion of methodology
6.4 Limitations
6.5 Future research
7 Conclusion
8 References
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Support strategies that promote parenting skills for parents with intellectual disabilities