Meeting the care needs of people with intellectual and developmental disabilities and their families through the Model of Nursing Based on Activities of Living

Abstract

Aim:

This study aimed to identify the problems families of people with intellectual and developmental disabilities face in meeting their family members' care needs, using the Model of Nursing Based on Activities of Living, and planned implemented and evaluated the nursing interventions to fulfill these care needs.

Method:

A cross-sectional screening model was used in the study. One hundred families of people with intellectual and developmental disabilities, who accepted home visits between September 2008 and December 2008, were included in the study.

Results:

The study revealed a statistically significant difference (p < 0.05) between the Model of Nursing Based on Activities of Living total mean scores of care needs in the pre- (1.69 ± 0.21) and post-nursing intervention (1.50 ± 0.24) periods. Nurse-led interventions for daily life activities of people with intellectual and developmental disabilities and their families were found to be effective (p < 0.05).

Conclusion:

In line with the Model of Nursing Based on Activities of Living, nurse-led collaboration with families and relevant institutions positively contributed to meeting the care needs of people with intellectual and developmental disabilities and their families.

Keywords

activities of daily living care coordination family caregivers intellectual disability nursing care nursing model parents support needs

Get full access to this article

View all access options for this article.

References

American Association on Intellectual and Developmental Disabilities (AAIDD) (2020) Definition of intellectual disability. Available at: https://www.aaidd.org/intellectual-disability/definition (accessed 1 February 2021).

American Nurses Association (ANA) (2019) Nurse’s role in providing ethically and developmentally appropriate care to people with intellectual and developmental disabilities. pp. 1–6. Available at: https://www.nursingworld.org/ana/ (accessed 1 February 2021).

Appelgren

Bahtsevani

Persson

, et al. (2018) Nurses’ experiences of caring for patients with intellectual developmental disorders: a systematic review using a meta-ethnographic approach. BMC Nursing 17: 51.

Auberry

(2018) Intellectual and developmental disability nursing: current challenges in the USA. Nursing: Research and Reviews 8: 23–28.

Ayyıldız

Ulupınar

(2019) Health education activities of the nurses working in the primary care health services towards disabled persons. Journal of Health Science and Profession 6(1): 51–61.

Başbakanlık Türkiye İstatistik Kurumu TÜİK. Turkey Disability Survey (2002) Turkish Prime Ministry Statistics Prime Ministry Presidency of Administration Republic of Turkey on Disable People. Ankara, Türkiye.

Cavkaytar

Ceyhan

Adıgüzel

, et al. (2012) Investigating education and support needs of families who have children with intellectual disabilities. Turkish Online Journal of Qualitative Inquiry 3(4): 79–99.

Desroches

Sethares

Curtin

, et al. (2019) Nurses’ attitudes and emotions toward caring for adults with intellectual disabilities: results of a cross-sectional, correlational-predictive research study. Journal of Applied Research in Intellectual Disabilities 32: 1501–1513.

Doody

Markey

Doody

(2012) Health of ageing people with intellectual disability and the role of the nurse in Ireland. Journal of Intellectual Disabilities 16(4): 275–286.

10.

Duran

(2018) Zihinsel engelli çocukların aileleri ve psikiyatri hemşireliği. Turkiye Klinikleri 4(1): 74–80.

11.

Ersoy

Çürük

(2009) Özel gereksinimli çocuğa sahip annelerde sosyal desteğin önemi. Aile ve Toplum 11(5): 104–110.

12.

Ersoy-Quadır

Temiz

(2018) Examination of the factors affecting the needs of mothers wıth disabled children (example of Konya region). The Journal of International Social Research 11(61): 831–839.

13.

Gilson

Bethune

Carter

, et al. (2017) Informing and equipping parents of people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities 55(5): 347–360.

14.

Gilson

Davis

Johnson

, et al. (2018) Mental health care needs and preferences for mothers of children with a disability. Child: Care Health and Development 44(3): 384–391.

15.

Günsel

(2010) Zihinsel engelli tanısı almış çocuğa sahip ailelerin aile işlevlerinin bazı değişkenler açısından incelenmesi. Ege Üniversitesi, Sosyal Bilimler Enstitüsü, 148 p.

16.

Hemm

Dagnan

Meyer

(2015) Identifying training needs for mainstream healthcare professionals, to prepare them for working with individuals with intellectual disabilities: a systematic review. Journal of Applied Research in Intellectual Disabilities 28(2): 98–110.

17.

Hung

Liu

Hung

, et al. (2003) Effects of a nursing intervention program on disabled patients and their caregivers. Archives of Gerontology and Geriatrics 36(3): 259–272.

18.

Huus

Olsson

Elgmark-Andersson

, et al. (2017) Perceived needs among parents of children with a mild intellectual disability in Sweden. Scandinavian Journal of Disability Research 19(4): 307–317.

19.

Karakuş

Kırlıoğlu

(2019) Engelli bir çocuğa sahip olmanın getirdiği yaşam deneyimleri: anneler üzerinden nitel araştırma. Selçuk Üniversitesi Sosyal Bilimler Enstitüsü Dergisi 41: 96–112.

20.

Kaytez

Durualp

Kadan

(2015) Engelli çocuğu olan ailelerin gereksinimlerinin ve stres düzeylerinin incelenmesi. Eğitim ve Öğretim Araştırmaları Dergisi 4(1): 197–214.

21.

Koolen

van Oorsouw

Verharen

, et al. (2020) Support needs of parents with intellectual disabilities: systematic review on the perceptions of parents and professionals. Journal of Intellectual Disabilities 24(4): 559–583.

22.

Köşgeroğlu

Mert-Boğa

(2011) Yaşam Aktivitelerine Dayalı Hemşirelik Modeli (YADHM)’ne göre zihinsel engelli bireylerin sorunları ve hemşirelik. Maltepe Üniversitesi Hemşirelik Bilim ve Sanatı Dergisi 4(1): 148–154.

23.

Kumcağız

Bozkurt

Kurtoğlu

(2018) Zihinsel engelli öğrencilerin ailelerinin gereksinimlerinin belirlenmesi. Samsun Sağlık Bilimleri Dergisi 3(1): 1–9.

24.

Lauer

McCallion

(2015) Mortality of people with intellectual and developmental disabilities from select US state disability service systems and medical claims data. Journal of Applied Research in Intellectual Disabilities 28(5): 394–405.

25.

Lehman

Irvin

(1996) Support for families with children who have emotional or behavioral disorders. Education & Treatment of Children 19(3): 335–354.

26.

Lewis

Wilson

Jaques

, et al. (2019) A qualitative study of nurses’ perspectives of caring for children with intellectual disability and their families in a paediatric acute care setting. Journal of Child Health Care 23(4): 639–651.

27.

Lewis

Stenfert-Kroese

(2010) An investigation of nursing staff attitudes and emotional reactions towards patients with intellectual disability in a general hospital setting. Journal of Applied Research in Intellectual Disabilities 23(4): 355–365.

28.

Nejad

Khaghanizade

Sarhangy

(2014) Training needs of the families with mentally retarded child: a mini-review. International Journal of Medical Reviews 1(2): 81–84.

29.

Özşenol

Işıkhan

Ünay

, et al. (2003) Engelli çocuğa sahip ailelerin aile işlevlerinin değerlendirilmesi. Gülhane Tıp Dergisi 45(2): 156–164.

30.

Roper

Logan

Tierney

(1990) The Elements of Nursing: A Model for Nursing Based on a Model of Living, 3rd rev. edn. New York, NY: Churchill Livingstone, pp. 1–376.

31.

Şengün-İnan

Üstün

Bademli

(2013) Türkiye’de kuram/modele dayalı hemşirelik araştırmalarının incelemesi. Anadolu Hemşirelik ve Sağlık Bilimleri Dergisi 16(2): 132–139.

32.

Seydel

Yıkılkan

Görpelioğlu

(2016) Engelli çocuk yakınlarının gereksinimleri ve mevcut hak ve hizmetlerden yararlanma durumları. Smyrna Tıp Dergisi 47–52. https://www.smyrnatipdergisi.com/dosyalar_upload/belgeler/Engelli%20%C3%A7ocuk%201496466639.pdf.

33.

T.C. Aile, Çalışma ve Sosyal Hizmetler Bakanlığı (2020) Engelli ve Yaşlı İstatistik Bülteni. Available at: https://www.ailevecalisma.gov.tr/media/42250/istatistik-bulteni-2020-mart.pdf (accessed 8 February 2021).

34.

The Irish Voice of Intellectual Disability (2015) Nursing frameworks of care for ıntellectual disability nursing—an overview. Frontline, Issue 99. Available at: https://frontline-ireland.com/nursing-frameworks-of-care-for-intellectual-disability-nursing-an-overview/ (accessed 17 February 2021).

35.

Turan-Gürhopur

İşler-Dalgıç

(2017) Family burden among parents of children with intellectual disability. Journal of Psychiatric Nursing 8(1): 9–16.

36.

Whittle

Fisher

Reppermund

, et al. (2018) Barriers and enablers to accessing mental health services for people with intellectual disability: a scoping review. Journal of Mental Health Research in Intellectual Disabilities 11(1): 69–102.

37.

Wilson

Collison

Feighan

, et al. (2020a) A national survey of nurses who care for people with intellectual and developmental disability. Australian Journal of Advanced Nursing 37(3): 1–12.

38.

Wilson

Riches

, et al. (2020b) Complex support needs profile of an adult cohort with intellectual disability transitioning from state-based service provision to NDIS-funded residential support. Journal of Intellectual & Developmental Disability 45(4): 355–364.

39.

World Health Organization (WHO) (2011) World Report on Disability. Available at: https://www.who.int/disabilities/world_report/2011/report/en/ (accessed 8 February 2021).

40.

Yıldırım-Sarı

(2007) Zihinsel engelli çocuğu olan ailelerde aile yüklenmesi. Cumhuriyet Üniversitesi Hemşirelik Yüksekokulu Dergisi 11(2): 1s–7s.

41.

Yıldırım-Sarı

(2010) Zihinsel yetersiz bireylerin sağlık sorunları. TAF Preventive Medicine Bulletin 9(2): 145–150.