Quality of life of families receiving early intervention services for children and their families in the Russian Federation

Authors:

Kolcheva Yulia Alexandrovna – PhD in Medical sciences (Cand. Med. Sci.), Associate Professor of the department of pediatrics, leading researcher of Department of Support for the Disabled, Institute of rehabilitation and habilitation of persons with disabilities of the Albrecht Federal Scientific and Educational Centre of Medical and Social Expertise and Rehabilitation, 50 Bestuzhevskaya Street, 195067 St. Petersburg, Russian Federation; e-mail: UAKolcheva@yandex.ru; ORCID https://orcid.org/0000-0003-0250-5478.

Sologubova Elena Sergeevna – junior researcher of Department of Support for the Disabled, Institute of Rehabilitation and Habilitation of Disabled Persons of the Albrecht Federal Scientific and Educational Centre of Medical and Social Expertise and Rehabilitation, 50 Bestuzhevskaya Street, 195067 St. Petersburg, Russian Federation; e-mail: el-sol@mail.ru; https://orcid.org/0000-0002-0421-8694.

Annotation:

Introduction. Currently, there are no uniform standards for assessing the quality of life of families covered by early assistance in the Russian Federation. There are practically no publications analyzing the dynamics of family quality of life indicators in this group. Taking this fact into account, our study is particularly relevant and timely.

Aim. To determine the quality of life of families receiving early assistance services for children and their families, the level of satisfaction, to identify correlations between the quality of life of the family, the duration of receiving early assistance services in the regions of the Russian Federation.

Materials and methods. 90 families receiving early assistance services for children and their families were surveyed. The developed questionnaire was used to assess the level of satisfaction with services, the quality of life of families receiving early assistance services for children and their families in the regions of the Russian Federation using modern measuring instruments – The Families in Early Intervention Quality of Life (FEIQoL) scale, BCFQoL Beach Center. Correlations were identified between the duration of receiving early intervention services and the studied indicators.

Results. The quality of life of families receiving early assistance services for children and their families in the Yaroslavl, Leningrad, Lipetsk regions, Kemerovo, and satisfaction with the services received were studied. Corresponding relationships were obtained, indicating the impact of early assistance services on improving the quality of life of families.

Discussion. To assess the quality of life of families receiving early intervention, the key factors are: health, organization of daily life, raising children, emotional state, stability and financial well-being, limitations in the family, support related to early intervention, employment opportunities, leisure and participation in life protection. These aspects are in line with international data.

Conclusion. Assessing the quality of life of families over time is key to ensuring the reliability and level of support and support of organizations in the early stages. Regular data analysis allows specialists to: optimize approaches to work; increase family satisfaction, taking into account their needs and expectations; achieve set goals in child development; formulate strategies based on objective data; strengthen family resources.

List of cited literature:

1. Zuna NI et al. Family quality of life: Moving from measurement to application. Journal of Policy and Practice in Intellectual Disabilities. 2009(6.):25-31.

2. Beach Center on Disability. The Beach Center Family Quality of Life Scale. Beach Center, University of Kansas. Lawrence, KS, USA. 2005.

3. Garcia-Grau P, McWilliam RA, Martinez-Rico G, Grau-Sevilla MD. Factor Structure and Internal Consistency of a Spanish Version of the Family Quality of Life (FaQoL). Applied Research in Quality of Life. 2018(13):385-98.

4. Alnahdi GY, Alwadei A, Woltran F. Measuring Family Quality of Life: Scoping Review of the Available Scales and Future Directions // International Journal Environ Res Public Health. 2022;23(19): 15473 DOI: 10.3390/ ijerph192315473

5. Garcia-Grau P, Martinez-Rico G, Gonzalez-Garcia RJ. Caregiver Burden and Family Quality of Life in Early Intervention: The Role of Mothers and Family Confidence. European Journal of Investigation in Health, Psychology. 2024(14):1325-37.

6. Dunst CJ, Trivette CM, Snyder DM. FamilyProfessional Partnerships: A Behavioral Science Perspective. Psychology. 2000(2):27-48.

7. Meral BF, Cavkaytar A, Turnbull AP, Wang M. Family Quality of Life of Turkish Families Who Have Children with Intellectual Disabilities and Autism. Research and Practice for Persons with Severe Disabilities. 2013;38(4).233-46.

8. Brown I, Brown RI. Choice as an aspect of quality of life for people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities. 2009(6):10-7.

9. Brown I et al. Family quality of life: Canadian results from an international study. Journal of Developmental and Physical Disabilities. 2003;15(3):207-30.

10. Zernickij OB. Vzaimosvjaz’ roditel’skogo otnoshenija s psihojemocional’nymi sostojanijami detej s tjazhe-lymi somaticheskimi zabolevanijami [The relationship between parental attitudes and psycho-emotional states of children with severe somatic diseases]. Family therapy. 2005(3):29-43. (In Russian).

11. Arhireeva TV. Metodika izmerenija roditel’skih usta-novok i reakcij [Methodology for measuring parental attitudes and reactions]. Psychology. 2002;6(5): 4-10. (In Russian).

12. Solodjankina OV. Vospitanie rebenka s ogranichenny-mi vozmozhnostjami zdorov’ja v sem’e [Raising a child with disabilities in a family]. Moscow. 2007. 80 р. (In Russian).

13. Kovlen DV, Adkhamov BM, Merzlikin AV, Ponomarenko GN. Razrabotka klinicheskikh re-komendatsii po fizicheskoi i reabilitatsionnoi medits-ine: sovremennoe sostoyanie voprosa [Development of clinical recommendations in physical and rehabilitation medicine: current state of the issue]. Sovremennye problemy nauki i obrazovaniya [Modern problems of science and education]. 2017;(4):34. (In Russian).

14. Fizicheskaya i reabilitacionnaya medicina : nacional’noe rukovodstvo /Pod red. G. N. Ponomarenko [Physical and Rehabilitation Medicine: National Guidelines / Edited by GN Ponomarenko]. Moscow : GEOTAR-Media. 2025. 704 p. (In Russian).