Parents’ and Service Providers’ Experiences of Accessing Health Services from an Intellectual Disability Health Team

Campbell, Denise; Milne, Jacqueline; Garg, Pankaj; Tomsic, Gail; Ong, Natalie; Silove, Natalie

doi:10.1177/21501327211014068

Cited by 5 publications

(6 citation statements)

References 12 publications

(20 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The three main barriers to the current healthcare and dental services were inadequate healthcare information for PWID, poor communication by the HCW, and difficulty accessing healthcare [ Table 5 ]. This corroborates with previous studies in western countries and a systematic review[ 9 10 , 25 28 ] in Malaysia. However, there was evidence where PWID could not fulfil their need in healthcare,[ 3 ] the evidence of PWID being discriminated against by the doctor or receiving bad attitudes from the staff are still scarce.…”

Section: Discussionsupporting

confidence: 93%

“…[ 9 ] Other factors such as inadequately trained staff, lack of assessment tools, and poor communication between the family and the service providers also contributed to the parents’ preferences. [ 10 11 ] However, the main reasons for the parents not bringing their children with intellectual disabilities to healthcare facilities were unaware of the existence of services, financial problems, and difficulties in bringing their children because of their behavior. [ 11 ]…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Perceptions toward healthcare and dental care services among parents and caretakers of people with intellectual disability (PWID)—A questionnaire study

Said¹,

Mohd²,

Naji³

2023

J Int Soc Prevent Communit Dent

View full text Add to dashboard Cite

A BSTRACT Aim and Objective: In Malaysia, there was lack of local evidence on the perception of parents/caretakers of people with intellectual disabilities (PWID) about healthcare. Thus, this study aims to assess the perceptions toward healthcare services of parents or caretakers for PWID. Materials and Methods: Online survey using Google Forms was conducted on parents/caretakers of PWID who attended the special care dentistry clinic and special community centers in Kuantan, Pahang. A questionnaire was developed for data collection. Cronbach alpha was conducted to measure the reliability. Content and face validation was performed to establish the validity. Data entry and analysis were done using IBM statistical package for social sciences (SPSS) version 24. This study only involved univariate (descriptive) data analysis in which categorical data were summarized in actual numbers and percentages. Results: The respondents’ perceptions toward healthcare access and services were reasonably good; about 50% disagreed and strongly disagreed on having difficulty accessing healthcare facilities. 65% and 55% of parents/caretakers brought PWID for regular health and dental checkups. The majority agreed and strongly agreed (about 73%) that healthcare staff gave equal services and good support and showed positive attitudes toward PWID under their care. Insufficient healthcare information and below-par communication skills remained the main barriers faced by the parents/caretakers of PWID. About 13% of the respondents reported experiencing discrimination in receiving health and dental services for PWID under their care. The Cronbach alpha scores for sections 2 and 4 were 0.892 and 0.681, respectively. Conclusion: Most of the respondents felt that Malaysia’s healthcare services for PWID were fairly good. However, it was intriguing to find that some still experienced discrimination. This shows that education about intellectual disability is salient for healthcare workers and should be embedded in the current curriculum.

show abstract

Section: Discussionsupporting

confidence: 93%

Section: Introductionmentioning

confidence: 99%

Perceptions toward healthcare and dental care services among parents and caretakers of people with intellectual disability (PWID)—A questionnaire study

Said¹,

Mohd²,

Naji³

2023

J Int Soc Prevent Communit Dent

View full text Add to dashboard Cite

show abstract

“…Parents and carers of PWID had favorable impressions of healthcare services in the current study, which is consistent with a study conducted in Sydney in which the parents spoke well of the clinic. [ 10 ] They had a positive experience overall because they were not stigmatized or subjected to discrimination by the staff, although stigmatizing attitudes toward PWID were also found in previous studies. [ 11 ] Stigma and discrimination can hinder the efforts of healthcare providers to deliver services to individuals with ID and reduce access to treatment.…”

Section: Discussionmentioning

confidence: 60%

“…[ 9 ] In most studies, the authors highlighted the importance of having a positive relationship between parents or caretakers of people with IDs and healthcare professionals as a key factor in positive healthcare experiences and outcomes. [ 4 5 , 10 11 ] The parents or caretakers of children with IDs preferred healthcare workers to communicate directly with their children rather than talk to them during the treatment; however, they claimed that it is hard to find this type of communication in every health institution. [ 12 ] The same study revealed that the lack of communication leads to irritation and tension between parents or caretakers and staff.…”

Section: Introductionmentioning

confidence: 99%

Exploring the barriers and expectations towards health care services among parents/caretakers of people with intellectual disability in Kuantan, Malaysia: A qualitative study

Mohd,

Said,

Ahmad

et al. 2023

JISPCD

View full text Add to dashboard Cite

Backgrounds: People with intellectual disabilities (PWID) are often characterized by challenges in learning and difficulties in performing daily activities. These difficulties can have an impact not only on the individuals themselves but also on the people around them, especially their parents, caregivers, and healthcare workers. Therefore, establishing a positive relationship between parents or caregivers and individuals with disabilities is crucial as a key factor in promoting positive healthcare experiences and outcomes. Aim: This study aims to explore the barriers and perceptions toward healthcare services among parents or caretakers of people with intellectual disability, including the challenges and their expectations toward healthcare services. Materials and Methods: This was a qualitative study using purposive sampling. Thirty participants were contacted at the initial stage and invited to participate in the study. Semi-structured in-depth interviews were done among parents and caretakers of PWID who attended Special Care Dentistry and Paediatric Dentistry clinics in Sultan Ahmad Shah Medical Centre, Kuantan, Pahang. Topic guides were generated from literature review and expert opinions, followed by pilot interviews to refine them. However, after the interviews were done for the first 13 participants, we have reached data saturation, and no new themes emerged. The interviews were recorded, verbatim transcribed, and analyzed using Braun and Clarke’s guidelines for thematic analysis. Results: The satisfaction of parents or caretakers toward healthcare services for PWID and positive experiences in receiving healthcare services were noted. However, the results revealed several barrier themes in seeking healthcare services: lack of availability of parking, longer waiting time, appointment time, crowded environment, limited information on the availability of the services, and longer travel duration. Furthermore, expectation themes emerged from this study: continuous follow-up, accessibility to healthcare services, and staff attitude.

show abstract

“…Studies exploring caregivers' experiences of accessing healthcare services for children and young people with complex disabilities indicate that the provision of emotional, social and informational support, or lack thereof, was as important as the medical aspect of care (14) (15) (16) (17). For example, when accessing rehabilitation services, parents of children and young people with cerebral palsy across low-and high-income contexts expressed a desire for information on understanding terms relating to cerebral palsy and how best to support their child's development (18).…”

Section: Introductionmentioning

confidence: 99%

What are the priority needs for those caring for children and young people with complex neurodisability within an ethnically diverse UK context? - The feasibility phase of the ENCOMPASS study

Prest

Wilson

Vassiliadou³

et al. 2023

Preprint

View full text Add to dashboard Cite

Background Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges which require complex packages of multidisciplinary care. Cerebral palsy, an exemplar complex neurodisability condition, is the most common cause of serious physical disabilities among children globally. It is unclear the best way to meet the emotional, social, practical, and empowerment needs of CYP with complex neurodisability and their caregivers. The aim of this study was to determine the needs and priorities of those caring for CYP with complex neurodisability. This forms part of the feasibility phase of a wider study (ENCOMPASS) which aims to adapt the Baby Ubuntu intervention, a participatory caregiver programme for families of CYP with complex neurodisability, to an ethnically diverse urban UK context. Methods Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six healthcare professionals from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open-ended questions to explore caregiving trajectories, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data-driven inductive thematic analysis. Results Three themes were identified that related to the aim of understanding caregivers experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) A Thirst for Knowledge and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. Conclusions The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP.

show abstract

Parents’ and Service Providers’ Experiences of Accessing Health Services from an Intellectual Disability Health Team

Cited by 5 publications

References 12 publications

Perceptions toward healthcare and dental care services among parents and caretakers of people with intellectual disability (PWID)—A questionnaire study

Perceptions toward healthcare and dental care services among parents and caretakers of people with intellectual disability (PWID)—A questionnaire study

Exploring the barriers and expectations towards health care services among parents/caretakers of people with intellectual disability in Kuantan, Malaysia: A qualitative study

What are the priority needs for those caring for children and young people with complex neurodisability within an ethnically diverse UK context? - The feasibility phase of the ENCOMPASS study

Contact Info

Product

Resources

About