Browsing CARL Research Reports 2022 by Issue Date
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- ItemPhysical and mental wellbeing of parents of children with Down syndrome in Ireland(Community-Academic Research Links, University College Cork, 2021-01-31) O'Sullivan, Emmet; Gibson, Louise; Down Syndrome Ireland; Ahern, Liam; Civil Society OrganizationIntroduction: At a prevalence of 1 in 700 births, Down Syndrome (DS) is the most common chromosomal birth defect, with Down Syndrome Ireland (DSI) supporting 3,500 people with DS. Having a child with an intellectual disability is associated with increased levels of depression, anxiety, stress, and poorer reported general health. Interventions to support parents should focus on specific factors thought to exacerbate parental stress. To date, no studies were found in the literature examining these parameters in an Irish population. Objectives: This study aimed to determine the current stress and wellbeing levels of parents of children with DS living in Ireland, to establish predictors for these wellbeing parameters, to identify supports desired by parents for their health and wellbeing, and to make recommendations to DSI regarding the issue of parental wellbeing and where to allocate resources. Methods: An online self-reported questionnaire (n=226) was created containing the Medical Outcomes Study Short Form (SF-20), the Depression Anxiety Stress Scales (DASS-21), a subset of the Carer Wellbeing and Support Questionnaire (CWS), and demographics. The questionnaire was distributed via DSI by email and through social media sites. Analysis: All analysis was computed via SPSS 26.0. Total and subcomponent scores were compared to normative data from user manuals via Independent Sample T Tests. Predictive factors were established via Multiple Regression Analysis. Results: Parents of children with DS scored significantly higher on the DASS-21 Depression (p<0.001), Anxiety (p<0.001), and Stress (p<0.001) subscales. Almost 50% reported depressive symptoms, and almost 17% had severe-extremely severe symptoms. Just over 35% reported anxiety, and 10% had severe anxiety. Stress levels were above normal in 44% and severe in 13%. Physical health scores were not negatively impacted. Employment status and medical status of the parent were the most important negative predictors of Depression, Anxiety, and Physical Health scores. Medical conditions in the parent and young age of the child were the most predictive factors of Stress. Conclusion: Parents of children with DS experience higher levels of depression, anxiety, and stress than average, but report better physical wellbeing. Unemployed parents experience the highest levels of depression and anxiety. Parents of children aged 0-5 years experience the highest levels of stress. Parents rate respite, speech therapy and psychological support as their top three priorities when seeking support.
- ItemQuality of life in Irish children with Down syndrome: a cross-sectional study(Community-Academic Research Links, University College Cork, 2022-01-31) Curtin, Ella; Gibson, Louise; Down Syndrome Ireland; Ahern, Liam; Civil Society OrganizationObjectives: Our main aim was to investigate quality of life (QoL) in Irish children with Down Syndrome (DS). We evaluated the impact of chronic health conditions on QoL, and determined whether frequency of screening for these conditions impact QoL. Design: This is a quantitative, cross-sectional study. Setting: This research was community-based, involving children registered with Down Syndrome Ireland (DSI) Munster and Dublin branches. Participants: Target population was parents of children with DS aged 8-18 years old, living in the Republic of Ireland (ROI). A parental survey, the “Kidscreen-27 Health-Related Quality of Life (HRQOL) Questionnaire for Children and Adolescents aged from 8-18 years” (Parents’ version), with additional demographic and health questions was distributed via email by DSI branches to members. -Exclusion criteria: Age >18 years, or residing outside ROI. Primary & Secondary Outcome Measures: Overall HRQOL score for each child was calculated, and sub-category scores within the questionnaire evaluated. Impact of demographic variables, chronic health conditions, and screening intensity for these conditions on HRQOL scores was investigated, along with effect of number of chronic conditions on screening intensity. Analysis included a subgroup of children aged 0-8 years with DS, and parental qualitative feedback. Results: Mean QoL scores were below that of the normative population, with social QoL scores significantly lower than the reference data. Those with higher frequency of medical screens had lower mean QoL. The subgroup with multiple underlying health conditions had the highest frequency of medical screens, and lowest mean QoL scores. Conclusion: Regular screening of children with DS minimises impact of co-morbidities. Unsurprisingly, those with high numbers of co-morbidities have low QoL, but frequent screening and medical appointments also impact QoL. Greater focus on friendship-building and social interaction is hugely important. Strategies for improving screening in the community at General Practitioner (GP) and Area Medical Official clinics should be explored.
- ItemA survey of experiences of parents of children with autism spectrum disorder (ASD) attending CUH: how can we become more ‘Autism-Friendly’(Community-Academic Research Links, University College Cork, 2022-02-14) McCarthy, Nicole; Gibson, Louise; Rainbow Club Cork Centre for Autism; O’Mahony, Karen; Civil Society OrganizationTitle: A survey of experiences of parents of children with Autism Spectrum Disorder (ASD) attending CUH: how can we become more “Autism Friendly”. Introduction ASD is a life-long developmental disability characterised by social and communication impairments. This makes the experience of accessing medical services very stressful for both children and their families. Despite higher than average hospitalization rates, the hospital environment is poorly suited to support this population's needs. Objectives: To assess the standard of facilities available to families of children with ASD and to identify areas for improvement concerning their care in CUH. By gaining information from children with ASD who attend CUH, the availability, and the quality of ASD services they avail of, areas for improvement can be identified and recommendations can be implemented to make CUH more ‘autism friendly’. Methods: This cross-sectional mixed-methods study was carried out in cooperation with the Rainbow Club Cork Centre for Autism. The study population consisted of parents whose children accessed services at the Rainbow Club, the survey link was available on their social media pages and website. The survey contains open comment boxes for recommendations and five-point Likert scales to rate services on accessibility and quality. Patient identifiers are not collected. Results: Responses indicate the need for improvements to services available for children with ASD. A lack of awareness of services that are currently available to children at present was also identified. Of the parents’ survey, 18% of parents surveyed were unaware of any facilities. Overall the main areas for improvement identified are the Emergency & Paediatric departments. Conclusion: These opinions and recommendations are be included in a monthly meeting of the Autism Friendly Hospital Working Group and taken into account when devising the strategy to make CUH an autism-friendly hospital.
- ItemNonbinary people in Ireland: left out of gender affirming policy and healthcare service provision for the transgender community(Community-Academic Research Links, University College Cork, 2022-04-14) Mulhall, Elliott; Frewen, Paul; Cork Gay Project; Spindler, Ailsa; Civil Society OrganizationIn Ireland, there are a number of gender affirming services provided to support transgender people. These services such as the policy available to change one's name or gender, and healthcare such as accessing HRT or surgery are limited for transgender people, and close to non-existent for nonbinary people. The aim of this research is to examine the gender affirming policy and healthcare in Ireland and how it fails to be inclusive of the nonbinary community. This project took an interpretive approach to carry out qualitative research in two parts, semi-structured interviews conducted with service providers in the area, and anonymous testimonials from nonbinary individuals. They were asked about current gender affirming policy, current gender affirming healthcare, and what those services are lacking/ what needs to be improved. There were a number of themes highlighted by participants, the main themes being ‘Gender Labels’, ‘Healthcare Inaccessibility’, and ‘Education’. These themes were discussed both in the literature review and findings chapter. Ireland is lucky to have the gender affirming services it has, but improvements need to be made so that nonbinary people are included.
- ItemIt takes a village to raise a child: an exploration of the experience of parenting in the Fairhill community(Community-Academic Research Links, University College Cork, 2022-04-20) O'Leary, Kasia; Forrest, Eilish; Sheehy, Mary; The Fairhill/Fairfield Community Association; Civil Society OrganizationThis Community Academic Research Links Project (CARL) was undertaken to understand the parenting experience in the Fairhill community, a community termed as disadvantaged located on the North side of Cork city. The Fairhill Community Association asked the researcher to map the voices of the cohort parents in the Fairhill Community and what would support them in their parental role with community participation being a key underpinning in this research. Seven participants (parents and grandparents) took part in semi‐structured telephone interviews with the researcher, which were then transcribed and thematically analysed. A place for parents to meet and form parental support groups as well a safe place for their children to congregate emerged from the research findings. The importance of acknowledging parental stress and supporting this in the community is another major theme of this research. A community and youth centre would support in these emerging themes.
- ItemGreat Sexpectations: an examination of female adolescents’ perspectives about pornography and sexual health education(Community-Academic Research Links, University College Cork, 2022-04-25) O’Carroll, Aoife; O’Súilleabháin, Fiachra; Davoren, Martin; The Sexual Health Centre Cork; Civil Society OrganizationThis research was a community-based participatory project involving University College Cork, Community Active Research Links Project (CARL) and The Sexual Health Centre Cork. The research looks at the impact of pornography from the perspective of adolescent females and how it affects young people. Furthermore, it examines the ways in which young people receive information about sex, especially education relating to pornography. Primary research was carried out by means of individual interviews. The epistemological positioning applied to this research is critical feminist theory with social constructivism to determine the lived experiences of women in society in relation to pornography. Participants for the research were recruited by the Sexual Health Centre with the criteria being female, aged between 17 and 19. Four participants took part in the interviews to ascertain theirs views on the impact of pornography was for young people, in particular females, and what their experiences of sex education is like. The participants were presented with a draft edition of an educational resource that included information about pornography- the risks, impacts and supports available and were asked to give feedback on it. The qualitative data collected was analysed using thematic analysis. The themes that emerged are: The Stigma of Female Sexuality, The Expectations, Consent and Education The study concluded that females’ adolescents are impacted by pornography and that there is a lack of education on the subject available to young people. The participants were very complimentary of the educational tool presented to them and recommended that this be rolled out for educational purposes. In the final chapter, concluding remarks and recommendations are provided for future endeavours.
- ItemAn exploration of Wellsprings outreach service – how are the women given continued support after leaving the residential service?(Community-Academic Research Links, University College Cork, 2022-04-25) Morrissey, Isabel; Doyle, Pearl; McDonnell, Valerie; Civil Society OrganizationWellsprings is a residential care and aftercare service for women aged 16 to 23. Wellsprings offer an outreach service to all of the women who have come through the residential service, it also takes direct referrals. No previous research has been completed on Wellsprings work before. This research aims to document the intensive and diverse range of supports offered by the outreach service. This dissertation was completed in conjunction with Wellsprings as part of the UCC Community-Academic Research Links initiative (CARL). This research explores Wellsprings Outreach Service and how it supports the women through their transition out of the residential service and continues to provide a continuum of life long support after this. It looks at the relationships between the women in the service and Wellsprings staff. The research draws on aftercare in Ireland more generally, looking at the policies and challenges that care leavers face, as a way of shaping the research topic. Primary research was carried out through three individual interviews with women engaged in the outreach service, and a focus group was held with three long-term members of Wellsprings staff. The common themes highlighted in the findings that are discussed are; the transition out of the residential service, emotional support, practical support and the relationships between the women and staff. The research also looks at staff and service provision in Wellsprings and makes some final recommendations for Wellsprings going forward, and the aftercare service in Ireland more generally.
- ItemDelivering interventions remotely through teletherapy during the Covid-19 pandemic: evaluating the experiences of Cope Foundation therapists(Community-Academic Research Links, University College Cork, 2022-04-25) O'Sullivan, Emer; Shore, Caroline; Cope Foundation; O'Sullivan, Norma; Civil Society OrganizationThis research dissertation evaluates the experiences of Cope Foundation therapists who delivered tele-therapy throughout the Covid-19 pandemic. It identifies the advantages, opportunities, challenges, and barriers which the therapist’s faced. This research is part of the CARL initiative and is in partnership with Cope Foundation. The research is underpinned by social constructivism and uses an interpretivism lens as well as a community-based approach. This primary research dissertation used a survey to gather data. The survey was sent to therapists at Cope Foundation via email. 22 responses to the survey were gathered and analysed using mixed methods. The research identified the advantages, opportunities, challenges, and barriers of tele-therapy. The findings indicate that a blended approach of therapy is the method preferred by therapists. The researcher has listed a number of recommendations in the concluding chapter
- ItemWhat social solutions can be implemented to integrate University College Cork students into community life within Magazine Road and surrounding areas?(Community-Academic Research Links, University College Cork, 2022-04-25) Mortell, Iesa; Forrest, Eilish; Civil Society OrganizationThe aim of this research piece explored the positive partnerships and existing initiatives that can enable pro social interaction between Residents of Magazine Road and Surrounding Areas, first year students that attend University College Cork, and University College Cork. The objective of this work analysed literature and policy within a local, national and international context. An online survey was administered to first year students which resulted in fifteen to twenty six student responses. The survey examined students attitudes while living and studying in University College Cork. Whilst the number of respondents is relatively low, it showed that existing initiatives within UCC are robust however they are not well known to the student population. It was found that while student experiences are overall positive with UCC they were not translating out to the community of Magazine road and surrounding areas. Based on this study, it is recommended that further research into this topic would benefit the students and community. The expansion of the Neighbourhood Support Officer role to integrate UCC and the student population into the surrounding communities.
- ItemThe unheard voices of adult adoptees: how it felt to be excluded from the Mother and Baby Home report(Community-Academic Research Links, University College Cork, 2022-04-25) Brady, Larah; Burns, Kenneth; Aitheantas – Adoptee Identity Rights; Maree Ryan-O’Brien; Civil Society OrganizationThe release of the report of the Commission of Investigation into Mother and Baby Homes and certain related matters (MBH Report) has sparked widespread criticism amongst adult adoptees due to the report’s portrayal of issues such as illegal and forced adoption practices in Ireland during the 20th century, and the narrow scope of the remit of the commission. The remit of the commission included 14 Mother and Baby Homes and 4 County Homes. As a result, adult adoptees who were born outside of these specified homes have been excluded from a process that directly impacts them. This CARL project sought to address two questions. First, what impact did the release of the MBH Report have on adult adoptees who were excluded from the remit of the commission? Second, what supports are needed for adult adoptees, and how should these supports be delivered? A total of 6 qualitative interviews were carried out online with adult adoptees. The main findings are that the release of the MBH Report led to feelings of anger, frustration and disappointment for adult adoptees who were excluded from the remit of the commission as it failed to acknowledge the extent of the intergenerational trauma and suffering that has been caused by closed adoption practices. The supports that are needed for adult adoptees include access to specialised counselling services, tracing supports, and the legal right to access original birth certificates and early life information.
- ItemIn what ways can children who have a sibling with autism spectrum disorder (ASD) be supported, in partnership with the Rainbow Club Cork Centre for Autism(Community-Academic Research Links, University College Cork, 2022-04-25) Kearns, Emily; Burke, Caroline; Rainbow Club Cork Centre for Autism; Civil Society OrganizationThis research was completed in collaboration with Rainbow Club Cork Centre for Autism (RCCCA) as a CARL project. CARL is an initiative by UCC that enables charities and community organisations to work in partnership with students to conduct research. RCCCA was set up by Karen and Jon O’Mahoney when they found out for themselves, how challenging it can be to access services and supports when needed for children with autism (ASD) along with support for their families. RCCCA supports the whole family with their needs, helping them to cope with the challenges they may encounter daily. RCCCA help raise awareness about people who have ASD, and what this looks like for the families involved. RCCCA supports the children with ASD, their siblings, and their parents in communicating effectively. RCCCA addresses how to cope with the diagnosis of ASD and supports the individual and family to develop new skills to navigate the world while providing an inclusive supportive space. RCCCA was set up by people who have a lived experience that they can share with others and understand their service users on a deeper level. The overarching aim of this research is to understand what ways children who have a sibling with ASD can be supported in partnership with RCCCA. This research is looking to aid RCCCA to move forward with their service and expand in the future to other supports through exploring the experiences of adult siblings with qualitative interviewing. The epistemological perspective that has been applied to this research is social constructivism which is based on and supported by an interpretive lens. From a social work perspective, it is important to advocate for the voice of the person, therefore interpretivism provides a grounding for the participants voice to be heard. This primary research was conducted through qualitative interviewing of six participants. The responses were transcribed and analysed for overarching themes. These themes are discussed to show the importance and need for sibling workshops, along with other forms of support in the findings and discussion. The conclusion and recommendations will identify the gaps in research and the importance of taking a holistic approach to exploring the family unit to better support the individuals. Several recommendations include family therapy, further education, awareness in schools, and a support line for siblings.