Enhancing Care Needs: Collaborating with Families for Intellectual Disability Support

1. 18th World Congress on Clinical Nursing and Practice September 21-22, 2018 Prague, Czech Republic | Panorama Hotel Prague Milevska 7, 140 63 Praha 4 Czech Republic «The Evaluation of Collaborations with Families in Meeting the Care Needs of People with Intellectual Disability According to the Nursing Model Based on Living Activities» Selda MERT BOĞA Kocaeli University, TURKEY seldamertboga@gmail.com

2. Introduction Having a child with a disability in the family is a social, spiritual and economic burden not only for children and their families, but also for society, and it is also a social responsibility to support thefamilyinthis regard. Dempsey and Keen (2008). A review of processes and outcomes infamily-centered services for childrenwith a disability. Köşgeroğlu and Mert Boğa (2011). Mental Disabled Persons’ Issues According to the Daily Life Activities Model (DLAM). Taggart et al. (2012). Examining the supportneeds of ageing familycarers in developing futureplans for a relative with anintellectual disability. O’Doherty et al. (2016). Perspectives of familymembers of people with anintellectual disability to amajor reconfiguration ofliving arrangements forpeople with intellectualdisability in Ireland.

3. Introduction continued According to World Health Organization (WHO) report on disability in 2011, approximately 15% of the world population (more than one billion) is made up of people with disabilities, and 700,000-1,500,000intellectually disabled individuals (IDIs) live in the world. WHO (2011). World report on disability and rehabilitation.

4. Introduction continued It is known that the group of disabled people who need more special care is IDIs. Due to various social skills requirements and special education in this area, and communication difficulties that may arise in families with intellectually disabled children, parents are more likely to require non-family social support, and professional specialists. Cenk et al. (2016), The Effectiveness of Structured Supported Education Programs forFamiliesWith Intellectually Disabled Children: The Example of Turkey Sevinc and Babahanoğlu (2016). Families with Children with Disabilities Burden of Burnout Status of Assessment Levels: Example Konya Turan Gürhopur and İsler Dalgic(2017).Family Burden in Intellectual Disable Children

5. Introduction continued However, the results of the studies on this regard report that the social institutions dealing with the problems of IDIs and their families are inadequate and that health professionals are inadequate in finding and resolving the problems of disabled individuals and their families. Silibello et al. (2016). Daily life changes and adaptationsinvestigated in 154 families with a childsuffering from a rare disability at a publiccentre for rare diseases in Northern Italy.

6. Introduction continued In other countries, nurses are primary responsible ones in meeting the needs of families with disabled individuals with professional help and they carry out professional help and care with home visits. The Centers for Disease Control (CDC) on this issue states that midwives and nurses working at the primary level have important responsibilities for the development of health services for IDIs and their families. Matziou et al. (2009). Attitudes of Nurse Professionals and Nursing Students Towards Children with Disabilities. Do Nurses Really Overcome Children’s Physical and Mental Handicaps? CDC (2009). Developmental Screening for Health Care Providers, The Role of the Primary Health Care Provider in Children‟s Developmental Health.

7. Introduction continued As is known, the aim of the nursing profession is to help the sick individual recover and gain independence, to protect and improve individual and communal health. This aim is achieved by nurses by using all of roles as caregiver, decision-maker, protector-supervisor-defender, manager, rehabilitative, comforting, educational and consulting. Köşgeroğlu and Mert Boğa (2011). Mental Disabled Persons’ Issues According to the Daily Life Activities Model. Fotiadou, (2016). Nursing care as perceived bynurses working in disability community settings in greece.

8. Introduction continued Since parents with children with disabilities have to live with a disabled individual for life, this requirement increases families' the needs for professional help and education in care. It is stated in the literature that mental health specialists and nurses have an important responsibility in meeting the needs of disabled people. Yildirim et al. (2013). Effects of a nursing interventionprogram on the depression and perception of family functioning of motherswith intellectually disabled children Cenk et al. (2016), The Effectiveness of Structured Supported Education Programs forFamiliesWith Intellectually Disabled Children. Sevinc and Babahanoğlu (2016). Families with Children with Disabilities Burden of Burnout Status of Assessment Levels: Example Konya.

9. Introduction continued Even if the number is limited, there are some international and national studies of different occupational groups to provide support to disabled individuals and their families who are experiencing problems. However, there is no study on the application of nursing care models in the field of public health in the care of disabled individuals and their families. Dempsey and Keen 2008; Matziou et al. 2009; Mert Boğa and Kösgeroglu 2010; Taggart 2012; Cenk et al. 2016; Fotiadou 2016; O’Doherty et al. 2016

10. Introduction continued Based on the fact that nursing care models should not only be used for treatment-oriented patients but also for non-hospitalized individuals, this study aimed to identify the needs of IDIs and their families; to plan, implement and evaluate nursing interventions for these needs by using NMBLA.

11. METHOD Type of Study The research is a descriptive, interventional, regional field study for identifying problems of IDIs and their families using NMBLA, planning, implementing and evaluating nursing interventions for these problems.

12. Population and Sample of Study The population of the study consists of 281 IDI families residing in the neighborhood of Tepebasi municipality in Eskisehir. The research sample consisted of 100 volunteer families, whose addresses were confirmed between September 2008 and June 2009, and who have volunteered to participate after getting about the aim and importance of the study.

13. Data Collection Tools Introductory Questionnaire Regarding Intellectually Disabled Individuals and Their Families (ANNEX-1): It consists of questions IDI’s socio-demographic and disability related characteristics and questions, prepared by researcher in line with the literature, about socio-demographic characteristics, disability-related knowledge and practices of families

14. According to NMBLA, Questionnaire Form for Determining the Care Needs of the Individuals and their Families with Intellectual Disability (ANNEX-2): According to the NMBLA and literature review, the researcher was prepared a questionnaire form consist of 130 questions to determine the present or possible problems that IDIs and their families are experiencing during their care by considering their physical, mental, cognitive, developmental, social and psychological characteristics. For each question on the questionnaire, "No problem" was rated as 0, "There is problem" as 1 point. Three experts were consulted for the convenience of the questionnaire and necessary corrections were made by taking theiropinions.

15. Implementation of Study The study was carried out in three stages with home visits and telephone interviews with families, residing in Eskisehir Tepebasi Municipality, who gave oral permission after getting information about the aim and importance of the study.

16. 1st phase(October-December 2008) 2nd phase(January-March 2009) 3rd phase(April-June 2009) Implementation of Study

17. Evaluation of Data The data obtained were analyzed with the SPSS 21 package program. The Wilcoxen sign test was used in the dependent groups of pre-nursing interventions and post nursing interventions. A significance level of 0.05 was used, and it is stated that there is a significant difference if p<0.05.

18. Table 1. Frequency Distribution of Socio-demographic Characteristics of IDIs within the Scope of Study

19. Table 2. Frequency Distribution of Disabilities of IDIs

20. Table 3. Frequency Distribution of Socio-demographic Characteristics of Families of IDIs Within the Scope of Study

21. Table 4. Comparing the Average Points of Care Needs Before and After Nursing Interventions According to NMBLA

22. Table 4. Continued.. * p<0.05 CNSA: Care Needs Score Averages; BNI: Before Nursing Intervention; ANI: After Nursing Intervention; max: Maximum; min: Minimum; sd: Standard deviation

23. CONCLUSION In line with theNMBLA to meet the care needs of PIDs and their families, collaborations with the families and the relevant institutions had a positive effect on the problem resolution. It is recommended that the number of the social projects for the needs of the PIDs and their families be increased, and that nurses participate in and have active roles in the projects.

24. There is No Such Thing as a Handicapped; There are Just Obstacles. Let's Overcome the Obstacles Together!!! Engelli Yoktur; Engeller Vardır. Engelleri Birlikte Aşalım!!!