The determinants of the relationship between parents with physical disabilities and perinatal services: a scoping review
Les déterminants de la relation entre les parents ayant un handicap physique et les services périnataux : étude de portée

Coralie Mercerat, Ph.D. Candidate, Psychology Department, Université du Québec à Montréal

mercerat [dot] coralie [at] courrier [dot] uqam [dot] ca

Dr. Thomas Saïas, Professor, Psychology Department, Université du Québec à Montréal

thomas [dot] saias [at] uqam [dot] ca


Because of recent medical advances and increasing advocacy for the rights of people with disabilities, more and more people with disabilities are becoming parents. Parenthood is considered a fundamental right by the United Nations, and appropriate perinatal services are an important promoting factor for positive parenting experience and practices. Despite this, access to parenthood and access to services is still hindered for parents and future parents with disabilities. This scoping review, based on eighteen (n=18) studies, provides a unique insight into the relationship between parents with physical disabilities and perinatal services. Results suggest that four main determinants influence this relationship: mothers’ needs, professionals’ characteristics, quality of relationship with professionals, and organization of services. Issues related to accessing information and the services themselves were also identified. Finally, a framework for accessibility is presented to better understand how to improve access to appropriate services for parents with physical disabilities.


En raison des récents progrès médicaux et de la défense croissante des droits des personnes handicapées, de plus en plus de personnes handicapées deviennent parents. La parentalité est considérée comme un droit fondamental par les Nations Unies, et des services périnataux appropriés sont un important facteur de promotion d’une expérience et de pratiques parentales positives. Malgré cela, l’accès à la parentalité et aux services associés demeure difficile pour les parents et futurs parents handicapés. Cette étude de portée, basée sur dix-huit (n = 18) études, fournit un aperçu unique de la relation entre les parents ayant un handicap physique et les services périnataux. Les résultats suggèrent que quatre principaux déterminants influencent cette relation : les besoins des mères, les caractéristiques des professionnel·les, la qualité des relations avec les professionnel·les et l’organisation des services. Des problèmes liés à l’accès à l’information et aux services eux-mêmes ont également été identifiés. Enfin, un cadre d’accessibilité est présenté pour mieux comprendre comment améliorer l’accès aux services appropriés pour les parents ayant un handicap physique.

Keywords: parents with physical disabilities, positive parenting, perinatal services, accessibility


With the development of medical technology and the recognition of the rights of people with disabilities in the last 20 years, an increasing number of men and women with disabilities are becoming parents (Blackford, Richardson, & Grieve, 2000). However, despite the fact that the right to start a family is defended by the Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006), access to parenthood is still hindered at various levels for people with disabilities (Kirshbaum & Olkin, 2002). Firstly, the literature highlights multiple situations in which parenthood is discouraged for people with disabilities: denial of sexuality (O’Toole, 2002), threat of losing child custody (Preston, 2011) and lack of information from professionals on the possibility of becoming a parent (Lawler, Lalor, & Begley, 2013). Secondly, studies report that physical access is hindered, regarding both physical access to the buildings in which services are provided and access to appropriate equipment for pregnancy monitoring. This last point seems to be an additional burden on the health of women with physical disabilities who are at greater risk of negative complications related to pregnancy and childbirth (Tarasoff, 2015). Finally, people with disabilities continue to experience discrimination, skepticism towards their ability to become parents –from their social circles and from professionals–, and negative attitudes regarding their parenting role (Bergeron, Vincent, & Boucher, 2012; Tarasoff, 2015). In this regard, the National Council on Disability highlighted in 2012 the “persistent, systemic and pervasive” nature of discrimination against parents living with disabilities (National Council on Disability, 2012).

Across the literature, the perinatal period has been considered a keystone period in the transition to parenthood that shapes further parenting experience. In order to enable people with disabilities to fully exercise their right to become parents and to have a positive parenting experience – including parental well-being and positive parenting practices –, adequate perinatal services adapted to their needs are essential. In 1998, the World Health Organization (WHO) issued a report setting out ten basic conditions to ensure the quality of perinatal services for women (World Health Organization, 1998). Two of these principles mentioned the importance of holistic perinatal services: taking into account the whole person, including any physical limitations, and family centered perinatal services, taking into account the patient's family environment and partner (Chalmers, Mangiaterra, & Porter, 2001; World Health Organization, 1998). These principles of holistic and family centered services are particularly relevant to the experiences of mothers and future mothers with physical disabilities. Despite the importance of accessible perinatal services, there are still few scientific studies specifically addressing the experiences and needs of parents with physical disabilities.

Based on these observations, the objective of this scoping review is to explore the scientific literature surrounding the relationship between parents with physical disabilities – fathers and mothers –, and perinatal services. The notion of “relationship” in this paper refers to the experience lived by the parents when they have interacted with the services. This study will contribute to a better understanding of this relationship, with the goal of providing accessible and satisfactory perinatal services to parents with disabilities.


The scoping review is a rigorous method of exploring and summarizing literature. This type of literature review is particularly relevant for research questions that have not yet been fully investigated and for areas of research that are still misunderstood. The aim is, through literature exploration, to identify recurring concepts, research gaps and future research directions (Daudt, van Mossel, & Scott, 2013; Pham et al., 2014). The scoping review differs somewhat from the systematic review, for example, in the choice of articles that will be reviewed. Indeed, whereas in a systematic review, the quality of the research is a selection criterion, in this scoping review, we, like Pham et al. (2014), have chosen not to exclude studies based on the quality of the methods. This scoping review was conducted following the five steps recommended by Arksey and O’Malley (2005) in their framework for conducting scoping reviews:

1 – Identifying the research question. The purpose of this scoping review was to answer the following question: what determinants define the relationship between parents with physical disabilities and perinatal services?

2 – Identifying relevant studies. In September 2018, we conducted a literature search in two databases used in the fields of psychology and disability – PsychInfo and Pubmed. Articles published in peer-reviewed journals between 1990 and 2018 were included. In order to identify scientific papers that considered both the fathers’ and mothers’ perspective, and to be as broad as possible regarding the types of physical disabilities and stages of the parenting process (pre-, peri- and postnatal periods), the following search terms were chosen: “*men with physical disab*” OR “physically disabled *men” OR “*men with motor disab*” OR “mother* with physical disab*” OR “physically disabled mother*” OR “mother* with motor disab*" OR "father* with physical disab*" OR “physically disabled father*” OR “father* with motor disab*” OR “parent* with physical disab*” OR “physically disabled parent*” OR “parent* with motor disab*” AND “perinatal” OR “postnatal" OR “pregnancy” OR “childbirth”. By choosing terms as “perinatal”, “postnatal”, “pregnancy” or “childbirth”, we attempted to include perinatal and early childhood services in a broad meaning.

Table 1 : words used in database search.
People Disabilities Event
*men ; mother*, father* ; parent* with physical disab* ; physically disabled ; with motor disab* perinatal ; postnatal ; pregnancy ; childbirth

In this primary research, we worked in collaboration with an occupational therapist researcher and a librarian who helped us identify the appropriate language related to the field.

3 – Study selection. All articles on parents or future parents with physical disabilities (for example pregnant women) were analyzed according to the following inclusion criteria (some of the articles found in the databases were on children with disabilities and were excluded) :