Including All Children and Families – Expanding Partnerships is a multi-faceted project centred around children with diagnosed disabilities, developmental delays, or who are at risk for developmental delays. The project is broken down into five separate studies of different sizes and conducted with different data collection methodologies.
Our project includes five studies (Fig. 1) :
In this study also entitled “Experiences of Parents in Rural and Remote British Columbia Who Have a Child with a Disability or Developmental Delay” Mary Stewart conducted face-to-face interviews with families in rural and remote communities raising a child with a disability or developmental delay.
Detailed description of Case Study
Eight parents living in rural and remote British Columbia, who have children on the Infant Development Program of BC under the age of 3, were interviewed to share their experiences of raising a child with a diagnosed disability or identified developmental delay. Data was categorized and analyzed using a qualitative content analysis and a systematic approach. The analysis generated 13 sub themes that included exploration of topics such as: rural versus remote, the value of interpersonal relationships, intense emotions, construction of disability, travel considerations and issues, financial burden, and service providers. These sub themes were then captured under three broad themes which included: community experiences, parenting experiences, and family experiences.
Parents discussed how they valued living in a ‘small town’ with its close proximity to local services, as this allowed them time with family and friends and opportunities to participate in outdoor and recreational experiences. This closeness also provided them the opportunity to develop close relationships with neighbors as well as local service providers. Consistent with the literature on raising a child with a disability or developmental delay, the parents in this study expressed that it was an intensely emotional experience. Parents also described the challenges of navigating complex systems of care that were accessed both within and outside of community. Additional costs were associated with the extensive travel required for care and this was further impacted by time away from community and family. While the parents valued having a ‘caring’ relationship with the local service provide (the infant development consultant) they also recognize the specialized expertise of professionals in larger urban centers.
Parents Survey Study: MPOC- (Measure of Process of Care)
This study, entitled “Parents’ Perceptions of Family Centred Care,” was a mailed out survey asking about parents’ perceptions of how family-centered practices influence their early intervention service delivery, and how this type of service delivery relates to other areas of their life; for example, their sense of hope and well-being and their own experiences of parenting, including stress levels as parents of a child with a disability or with a developmental delay.
Detailed description of Parents Survey Study
Family-centered practice is well documented to be the most beneficial method of service delivery as it is related to promoting well-being for families. The “Parents’ Survey- MPOC” study looked a parent’s perceived experience with family centered service delivery as well as parent well being, life satisfaction and level of stressors. The study utilized the Measure of Process of Care -20, developed by King, King and Rosenbaum in 1995 at MacMaster University, Canada, together with other measures asking parents to rate their sense of hope, stress and effectiveness as parents raising children at-risk for developmental delays or with disabilities. Twenty-nine parents responded providing rich information about access to services as well as feelings of competency. The parents in the study had children from birth to age 12 years and all participated in one of 4 provincial programs: IDP/AIDP/ASCDP/SCDP. Data analyses includes descriptive and non-parametric analyses (e.g. correlation measures between the different questionnaires), and it aims to include regression analyses to find out predictors for family-centred and overall parent well-being for this specific sample of participant parents.
The study entitled “Geo-Ethnography – Parents Access to Services,” is the follow up to the Parents’ Survey study, had participants fill in a calendar to represent a month in their lives in terms of access to services for their child with additional needs. A telephone interview found out from parents what helped, or was challenging about some of the specific examples they provided in the calendar. The study will create visual “maps” representing distances travelled and the complex daily schedules of these families.
Detailed description of Calendar Study
The geo-ethnography study is a continuation of the data collected in the MPOC survey study. Of the 29 parents that completed the MPOC survey, 14 parents were approached who indicated their willingness to be re-contacted for a follow-up study. To-date, 10 parents have confirmed their desire to participate and by the end of the data collection stage, up to 10 parents will have filled out a calendar covering a one month time period indicating the date, location, length of time, distance and mode of travel for all the programs, services and appointments they participate in for their child. The participants are also participating in an in-depth, follow-up telephone interview with a researcher (after their calendar is completed) where they share examples in responding to questions about “what is helpful” from service providers and services in their community, and what has hindered these activities, or in which situation participants have experienced challenges. Data analyses will utilize “critical incident” methodology.
Parents’ Focus Groups
In the study entitled “Parents’ Experiences in Accessing their Child’s Early Intervention Data, ”these groups, parents and researchers met to discuss parents’ experiences in accessing their child’s developmental information or records in early intervention or child development services. We were specifically interested in listening to what parents’ had to say about the possibility of accessing an electronic database such as” LINKED-DISC”.
Detailed description of Parents’ Focus Groups
Seven focus groups were held in Vancouver, North and Interior regions of British Columbia where parents were invited to participate and share their experiences and ideas about how they currently access their children’s early intervention data and their preferred choices if access to an electronic database were a possibility. Participant parents had to have a child ages birth to 12 years, and be currently involved in one of the 4 early intervention/supported child development programs of BC. Qualitative content analyses are in progress to identify salient themes and sub-themes. Participant and community summaries will be uploaded in the weeks to follow.
Service Providers Study
This study entitled “Service Providers’ Experiences in Providing Family-Centred Services” used the MPOC-SP (Measure of Process of Care for Service Providers). In addition to demographic information for early intervention and supported child development service providers, participants were asked to share their perceptions on what works and what the barriers are that challenge them. They also discussed what they see as opportunities in providing family-centred services for parents in urban, rural and remote areas in British Columbia. 62 participants filled in the surveys and 14 of them were interviewed for further information.
Detailed description of Service Providers Study
This study examined the experiences of early intervention and supported child development service providers who work with families with children who are at risk for developmental delays or with a disability. The programs where these service providers work self-describe as family-centred, where parents work in collaboration and consultation with their service providers in identifying their children’s needs. In Phase 1 of the study 62 participants completed three online questionnaires. The first questionnaire was “The Measure of Process and Care Questionnaires – Service Providers or MPOC-SP (Woodside et al., 1998). The second and third questionnaires are entitled, respectively, “You and Your Family” and “You and Your Community”. The questions asked inquired about the needs service providers identify when working with families from a program and community perspective. In Phase 2, a group of 14 participants followed up the study with a telephone interview and were asked to talk about examples of what was helpful, and what hindered their work with families throughout the different communities they serve in rural and urban locations in BC.
The study, “An Interdisciplinary Study of the Trajectories of At-Risk Infants and Children,” is being completed in 3 phases. Using linked population databases, the study examines health and educational trajectories between birth and 8 years of age of children born between 1996 and 1997 in British Columbia. The study focuses on potential differences in health and development outcomes between children who were accepted to a Neonatal Intensive Care Unit (NICU), levels II or III and identified as “at-risk,” and those who did not receive this treatment and identified as “non risk.”
Detailed description of NICU Study
This study analyzes the health trajectories and educational outcomes of 71,698 children born in a two-year cohort. Children were all born in BC between January 1996 and December 1997 and they have been continuously registered with the MSP (BC Medical Services Plan) at least until the end of 2003.Children were categorized into “at-risk” group if they were admitted to a Neonatal Intensive Care Unit and into “non-risk” group if they did not undergo NICU treatment at birth. For a brief report summarizing these children’s characteristics, please click here. A more detailed description of the cohort and the process of linking data from different population files is included in the full report on the same site. Analyses of health trajectories point to persistent differences between “at-risk” and “non-risk” children. For example, NICU children and their families access more mental health services right after birth and this disparity appears again when children are 4-5 years of age. Preliminary analyses linking education and health databases also point towards significant differences in educational outcomes between NICU and non-NICU children. Children who spent over 5 days in NICU after birth are more likely not to meet expectations in the Grade 4 Foundational Skills Assessment (FSA) for reading, writing and numeracy.
Quick Study facts
- Study 1, “Case Study” specifically sought information and the voice from families living in rural and remote locations in BC’s Interior and North Regions.
- Studies 2 and 2.a., “Parents’” Survey Study and “Calendar” Study included participants living in smaller urban locations in BC”s Interior and Northern Regions
- Study 3, “Parents’ Focus Groups” included participants living in urban and/or rural communities in the Vancouver Coastal, Fraser, Interior and North Regions
- Study 4, “Service Providers,” will include participants living in urban and/or rural communities in the Vancouver Coastal, Vancouver Island, Fraser, Interior and North Regions
- Study 5, “NICU” includes data on children’s health and education that has been retrieved from provincial databases.
- Study 1, “Case Study” has been completed, with a first manuscript currently under preparation
- Study 2 and Study 2.a. “Parents” Survey Study and “Calendar” Study are still in progress with data analyses underway for the “Parents’” Survey Study “
- Study 3, “Parents’ Focus Groups” is in the last stages of data analyses with participant and community summaries soon to be uploaded.
- Study 4, “Service Providers” is currently in the data collection stages of phase 1 and 2.
- Study 5, “NICU” study has recently transitioned from phase 1, the analyses of children’s health trajectories, to phase 2, the data linkage between health and educational data, comparing the trajectories of non-risk vs. at-risk children.