What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice

Shé, Éidín Ní; McDonald, Fiona E. J.; Mimmo, Laurel; Ross, Xiomara Skrabal; Newman, Bronwyn; Patterson, Pandora; Harrison, Reema

doi:10.3390/children8121118

Cited by 2 publications

(1 citation statement)

References 57 publications

(156 reference statements)

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“…The study was performed in the German health care system; it must be kept in mind that other ways of expressing SCNs could prevail in other cultures (Molassiotis et al, 2017;Wang et al, 2022). Ethnic and racial minorities as well as cancer patients with intellectual disabilities might have different SCNs than our cohort reported (Ní Shé et al, 2021;Mazor et al, 2022).…”

Section: Discussionmentioning

confidence: 77%

Supportive care needs and health-related quality of life in cancer patients receiving palliative care

Schnabel,

Lordick,

Oberth

et al. 2023

Front. Psychol.

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ObjectiveCancer patients receiving palliative care experience a variety of impairments in their quality of life (QoL), and have corresponding supportive care needs (SCNs). The aim of this study was to analyze the relationship between SCNs, satisfaction with QoL dimensions, and the perceived importance of these dimensions.MethodA sample of 152 cancer patients receiving palliative care were included in this cross-sectional study. Eight dimensions of QoL were defined and assessed concerning SCNs, satisfaction, and subjective importance using a new assessment instrument with five-point scales (range 1–5) for each dimension.ResultsAmong the eight specific domains examined, the greatest SCNs were observed for absence of pain (M = 3.18; SD = 1.29). The patients were least satisfied with their physical functioning (M = 2.60; SD = 0.84), and the dimension social relationships (M = 4.14; SD = 0.72) received the highest perceived importance ratings. The eight dimensions’ SCNs scores were significantly correlated with each other (r between 0.29 and 0.79); the lowest correlations were found for social relationships. The correlations between the satisfaction scores and the SCNs differed from dimension to dimension, with coefficients between −0.32 (absence of pain) and − 0.57 (sleep quality).ConclusionThe results show that detriments in QoL do not automatically indicate high levels of SCNs in those dimensions. Health care providers should consider both factors, QoL (as measured with QoL questionnaires) and subjectively expressed SCNs, to optimize their patients’ care regimens.

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Section: Discussionmentioning

confidence: 77%

Supportive care needs and health-related quality of life in cancer patients receiving palliative care

Schnabel,

Lordick,

Oberth

et al. 2023

Front. Psychol.

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Cancer Prevention in Adults with Intellectual Disabilities: A Systematic Literature Review of Caregiver Perspectives in Institutional and Home Care Settings

Klara,

Elmadani,

Éva

et al. 2024

IJERPH

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Background: Individuals with intellectual disabilities (IDs) face unique challenges in accessing cancer prevention measures. Caregivers play a crucial role in facilitating these measures, yet their perspectives are under-researched. Methods: This systematic literature review explores caregiver perspectives on cancer prevention for adults with IDs in institutional and home care settings, aiming to understand their roles, knowledge, and challenges. Thirteen articles from the UK, the USA, Canada, and Ireland were analyzed through thematic synthesis. Four overarching themes were identified: breast cancer screening perspectives, caregivers’ knowledge and barriers to cancer prevention, caregivers’ perspectives, and cultural context and decision-making. Results: Caregivers, including healthcare professionals and family members, are essential in facilitating breast cancer screening for individuals with IDs. Challenges include explaining screening procedures, limited awareness, and logistical barriers, highlighting the need for targeted educational interventions. Disparities in access underscore the necessity for comprehensive training programs. Healthcare professionals’ perspectives reveal existing disparities and suggest interventions for improved accessibility and understanding. Cultural context influences decision-making, emphasizing the importance of culturally sensitive care. The role of family caregivers in decision-making necessitates empowering and supporting them through tailored interventions. Conclusions: This review provides insights into the challenges and opportunities in cancer prevention for individuals with IDs, suggesting the need for educational interventions, training programs, and systemic changes to address disparities. It lays the groundwork for future research and the development of holistic and inclusive strategies in this critical healthcare domain.

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What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice

Cited by 2 publications

References 57 publications

Supportive care needs and health-related quality of life in cancer patients receiving palliative care

Supportive care needs and health-related quality of life in cancer patients receiving palliative care

Cancer Prevention in Adults with Intellectual Disabilities: A Systematic Literature Review of Caregiver Perspectives in Institutional and Home Care Settings

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