A study of caregiver support services: Perspectives of family caregivers of persons with intellectual disabilities in Singapore

Abstract

Most people with intellectual disabilities in Singapore live with family and are supported by family caregivers. Many caregivers lack the awareness, skills and resources needed for their caregiving role. A caregiver support service designed to build the capability of family caregivers serving children and adults with intellectual disabilities was evaluated after 2 years of operation to ascertain the level of caregiver coping and resilience, perceived impact of strategies for emotional support, and satisfaction with a range of support services and gaps in service. Family caregivers were surveyed regarding satisfaction with services received using the Client Satisfaction Questionnaire (CSQ‐8) and feedback from activities and events. Their coping and resilience were measured with the Coping Competence Questionnaire (CCQ). Qualitative data from caregiver interviews and staff focus groups were analysed for key themes that were triangulated and converged with other findings. Satisfaction, better coping and resilience were associated with specific support services. Key themes emerged around several effective supports and areas of unmet needs across the lifespan. Limitations and areas for improvement were identified to meet a broader range of caregivers. Targeted family support services can enhance the well‐being of caregivers supporting people with intellectual disabilities (ID) across the lifespan. The results inform policymakers and support agencies that support of the family, not just the person with ID, is an important factor and needs to be incorporated at the heart of the design and development of any inclusive community living in Singapore.

Dyadic Predictors of Willing to Engage in Physical Activity and Emotional Eating in Children and Adolescents with Mild and Moderate Intellectual Disability

“…Our study had several important limitations, mainly: (1) it was a cross-sectional design; (2) it used only self-report measures (based on the parents’ assessment of their children’s functioning); (3) although our sample consisted of fathers and mothers, there was a significant advantage of mothers; (4) a convenience sampling method was used to recruit participants; (5) (despite good reliability and validity of all measures) not all questionnaires have been previously validated in a Polish sample; (6) our study did not focus on a detailed assessment of a child’s IQ (with a distinction between different areas where a child may have slightly different levels of skill and development; parents, on the basis of a previous diagnosis, informed about the level of intellectual disability of the child); (7) neurologic conditions in comorbidity or the intellectual disability due to syndromes were not excluded or considered in detail (which, as you know, may be important, because these aspects can affect the problem of weight or eating; for example, in some genetic syndromes—such as Prader-Willi Syndrome or Bardet-Biedl Syndrome—the feeding management is problematic for parents, due to the typical voracity of these children); (8) caregivers’ burdenrelated to child’s intellectual disability was not analyzed, and, as is known, parents play a central role in the education and rehabilitation processes (therefore, when their child requires additional and/or long-term support, and/or when parents do not have support from other important people or institutions (i.e., special school/kindergarten), they may be at a much greater risk of developing psychosocial problems, including severe stress, depression, and parental burnout) [ 60 , 61 , 62 ].It is therefore necessary to conduct (longitudinal or experimental) research in the future that will take into account the above limitation, so that there are studies that indicate, among others, that the parental feeding style may be decisive for the level of the child’s emotional eating, and the relationship between these variables is bidirectional (e.g., [ 63 ]). Further research (with the introduction of improvements to the project) is also necessary, due to the fact that, by using objective measurements, we will avoid bias in response, and by using ecological momentary assessment (EMAs; measurement based on repeated measurement of variable(s) in an individual’s natural environment) we will gain even better insight into the exact dynamics of the relationship between variables and ongoing changes.…”

Navigating The Journey: Exploring The Personal Experiences and Psychological Needs of Informal Caregivers

“…By promoting acceptance, empathy, and support, caregivers can receive the understanding and assistance they need, leading to improved well-being and better care for their loved ones with depression. Riches et al (2022) discussed the significant implications for policymakers and support organizations, highlighting the importance of considering the needs of the entire family, not just the care-recipient.…”

Family Caregiver Adaptation during the Transition to Adulthood of Individuals with Intellectual Disabilities: A Scoping Review

“…Caregiving for an individual with intellectual disability (ID) is a unique journey for each family caregiver. Due to the child’s cognitive limitations, the limited availability of social resources, possible changes in government policy, and caregivers’ ageing, the demands of caring for their son or daughter with ID who lives in a community setting may vary across the lifespan [ 1 , 2 ]. Family caregivers, the most prolonged and consistent care providers, continuously undergo adjustment and adaptation across their caregiving journey.…”