Evaluation of a nurse-led counselling intervention on selected outcome variables for parents of children with congenital adrenal hyperplasia
-
Poonam Verma
,
Sunita Sharma
Abstract
Objectives
Long-term care of children with congenital adrenal hyperplasia (CAH) has psycho-social implications for parents. Experts recommend a customized educational program for parents to facilitate their psychological adaptation and improve disease management. Such educational programs often provided by nurse counsellors are well evaluated in developed countries. There is a dearth of data on nurse-led counselling in the context of less developed countries. We aimed to evaluate the effect of a nurse-led counselling intervention on various psycho-social outcomes among parents of children with CAH.
Methods
Fifty consecutive parents of children with CAH attending an outpatient clinic at a tertiary-care teaching hospital were enrolled. Parents’ stress level, stigma, knowledge, practices, and treatment adherence were assessed by using Cohen’s Perceived Stress Scale (PSS), DSD Stigma scale, and HILL-Bon Medication Adherence Scale (HB-MAS). Three educational counselling sessions were conducted within a month’s gap, using PowerPoint presentations and a booklet. Assessment of outcomes was done at baseline and at the end of the third session.
Results
At baseline, the majority (90%) of the parents had moderate stress. Half of the parents had mild and the rest had moderate stigma. After the intervention, the majority (94%) of parents had shifted to mild levels of stress and stigma. At baseline, 86% of the parents had poor knowledge about the disease whereas post-intervention, 80% were having good knowledge. Disease management practices and treatment adherence also improved after the intervention.
Conclusions
Nurse-led counselling was effective in reducing psycho-social problems, increasing knowledge, as well as improving practices and treatment adherence.
-
Research funding: None declared.
-
Author contributions: PV: literature search, selection of tools, making final booklet, data collection, data analysis and preparation of first draft. SK, SS and DD: study design, selection of tools, making final booklet, validation of data interpretation and intellectual inputs during the whole process. LR: booklet review and preparation of final draft of manuscript, PM: intellectual inputs in selection of tools and conducting counselling sessions, DD: preparation of final draft. All authors approved the final version of manuscript.
-
Competing interests: Authors state no conflict of interest.
-
Informed consent: Informed consent was obtained from all individuals in this study.
-
Ethical approval: Ethical approval was obtained from the Institute Ethics Committee (Ref no. INT/IEC/2021/SPL-1017 dated 02/07/2021).
References
1. Witchel, SF. Congenital adrenal hyperplasia. J Pediatr Adolesc Gynecol 2017;30:520–34.10.1016/j.jpag.2017.04.001Suche in Google Scholar PubMed PubMed Central
2. Dayal, D, Yadav, J, Seetharaman, K, Aggarwal, A, Kumar, R. Etiological spectrum of precocious puberty: data from Northwest India. Indian Pediatr 2020;57:63–4.10.1007/s13312-020-1705-1Suche in Google Scholar
3. Forest, MG. Recent advances in the diagnosis and management of congenital adrenal hyperplasia due to 21-hydroxylase deficiency. Hum Reprod Update 2004;10:469–85.10.1093/humupd/dmh047Suche in Google Scholar PubMed
4. Daniel, R, Yadav, J, Kumar, R, Malhi, P, Sharma, A, Dayal, D. Health-related quality of life and fatigue perception in children with congenital adrenal hyperplasia: a developing nation perspective. Pediatr Endocrinol Diabetes Metab 2021;27:266–71.10.5114/pedm.2021.109269Suche in Google Scholar PubMed
5. Singarayan, V, David, A, Ayyar, V, James, S. Study to assess the knowledge of caretakers regarding corticosteroid therapy in children with CAH-21 hydroxylase deficiency. J Fam Med Prim Care 2020;9:2814–7.10.4103/jfmpc.jfmpc_131_20Suche in Google Scholar PubMed PubMed Central
6. Singarayan, V, David, A, Ayyar, V, James, S. The level of stress among the parents of children having CAH 21 hydroxylase deficiency between 6 years and above in a selected tertiary care hospital, Bangalore. Indian J Public Health Res Dev 2019;10:207–12.10.5958/0976-5506.2019.02798.0Suche in Google Scholar
7. Wisniewski, AB. Psychosocial implications of DSD treatment for parents. Curr Opin Urol 2017;27:11–3.10.1097/MOU.0000000000000344Suche in Google Scholar PubMed PubMed Central
8. Bhakhri, BK, Jain, V. Congenital adrenal hyperplasia: as viewed by parents of affected children in India-a pilot study. J Pediatr Endocrinol Metab 2011;24:959–63.10.1515/JPEM.2011.358Suche in Google Scholar PubMed
9. Boyse, KL, Gardner, M, Marvicsin, DJ, Sandberg, DE. “It was an overwhelming thing”: parents’ needs after infant diagnosis with congenital adrenal hyperplasia. J Pediatr Nurs 2014;29:436–41.10.1016/j.pedn.2014.01.007Suche in Google Scholar PubMed PubMed Central
10. Lestari, MA, Erawati, M. Family education strategies in caring for children with congenital adrenal hyperplasia (CAH): a literature review. Jurnal Ilmu Keperawatan Anak 2020;3:1–11.10.32584/jika.v3i2.623Suche in Google Scholar
11. Schaeffer, T. The role of nurse educator in a multidisciplinary clinic for patients and families affected by CAH due to 21- hydroxylase deficiency. Abstracts of pediatric endocrinology nursing society convention. J Pediatr Nurs 2011;26:275–6.10.1016/j.pedn.2011.04.007Suche in Google Scholar
12. Cohen, S, Kamarck, T, Mermelstein, R. A global measure of perceived stress. J Health Soc Behav 1983;24:386–96.10.2307/2136404Suche in Google Scholar
13. Pangtey, R, Basu, S, Meena, GS, Banerjee, B. Perceived stress and its epidemiological and behavioral correlates in an urban area of Delhi, India: a community-based cross-sectional study. Indian J Psychol Med 2020;42:80–6.10.4103/IJPSYM.IJPSYM_528_18Suche in Google Scholar PubMed PubMed Central
14. Rolston, AM, Gardner, M, Vilain, E, Sandberg, DE. Parental reports of stigma associated with child‘s disorders of sex development. Int J Endocrinol 2015;2015:980121.10.1155/2015/980121Suche in Google Scholar PubMed PubMed Central
15. Kim, MT, Hill, MN, Bone, LR, Levine, DM. Development and testing of the hill-bone compliance to high blood pressure therapy scale. Prog Cardiovasc Nurs 2000;15:90–6.10.1111/j.1751-7117.2000.tb00211.xSuche in Google Scholar PubMed
16. Khairnar, MR, Kumar, PG, Kusumakar, A. Updated BG Prasad socioeconomic status classification for the year 2021. J Indian Assoc Public Health Dent 2021;19:154–5.10.4103/jiaphd.jiaphd_52_21Suche in Google Scholar
17. Sanders, C, Carter, B, Goodacre, L. Parents need to protect: influences, risks and tensions for parents of prepubertal children born with ambiguous genitalia. J Clin Nurs 2012;21:3315–23.10.1111/j.1365-2702.2012.04109.xSuche in Google Scholar PubMed
18. Mitchelhill, I, Betts, G, King, J, Murray, F, Crisp, J, Briggs, C. Evaluation of a psychosocial education program for families with congenital adrenal hyperplasia. Int J Pediatr Endocrinol 2013;2013:119.10.1186/1687-9856-2013-S1-P119Suche in Google Scholar
19. Joshi, P, Yadav, B, Jain, V, Sharma, S. Knowledge, stress and adopted coping strategies of parents of children having congenital adrenal hyperplasia: an exploratory survey. Indian J Child Health 2017;4:127–32.10.32677/IJCH.2017.v04.i02.005Suche in Google Scholar
20. Szymanski, KM, Salama, AK, Whittam, B, Frady, H, Cain, MP, Rink, RC. Beyond changing diapers: stress and decision-making among parents of girls with congenital adrenal hyperplasia seeking consultation about feminizing genital restoration surgery. J Pediatr Urol 2019;15:653–8.10.1016/j.jpurol.2019.09.022Suche in Google Scholar PubMed
21. Pellur, M, Narasimhan, H, Mahadevan, S. Sociocultural dimensions of congenital adrenal hyperplasia: an ethnographic study from Chennai, South India. Indian J Endocrinol Metab 2019;23:227–31.10.4103/ijem.IJEM_177_18Suche in Google Scholar PubMed PubMed Central
22. De Silva, KS, De Zoysa, P, Dilanka, WM, Dissanayake, BS. Psychological impact on parents of children with congenital adrenal hyperplasia: a study from Sri Lanka. J Pediatr Endocrinol Metab 2014;27:475–8.10.1515/jpem-2013-0267Suche in Google Scholar PubMed
23. Ekbom, K, Strandqvist, A, Lajic, S, Hirschberg, AL, Falhammar, H, Nordenström, A. Assessment of medication adherence in children and adults with congenital adrenal hyperplasia and the impact of knowledge and self-management. Clin Endocrinol 2021;94:753–64.10.1111/cen.14398Suche in Google Scholar PubMed PubMed Central
24. Jain, V, Kabra, M. The unusual story of an infant with congenital adrenal hyperplasia. Indian Pediatr 2017;54:781–2.10.1007/s13312-017-1176-1Suche in Google Scholar
25. Tripathi, N, Sharma, KK. Role of nursing personnel for child health services. Asian J Nurs Edu Res 2022;12:57–1.10.52711/2349-2996.2022.00011Suche in Google Scholar
© 2023 Walter de Gruyter GmbH, Berlin/Boston
Artikel in diesem Heft
- Frontmatter
- Editorial
- Thyroid – what is a healthy thyroid function test?
- Review
- Thyroid storm in pediatrics: a systematic review
- Opinion Paper
- DSD/intersex: historical context and current perspectives
- Original Articles
- Predictive value of 6 h postoperative parathyroid hormone level on permanent hypoparathyroidism in pediatric total thyroidectomy: a pilot study
- Evaluation of a nurse-led counselling intervention on selected outcome variables for parents of children with congenital adrenal hyperplasia
- The relationship between estrogen and subsequent growth restriction among adolescents with heavy menstrual bleeding at menarche
- An open-label extension of a phase 2 dose-finding study of once-weekly somatrogon vs. once-daily Genotropin in children with short stature due to growth hormone deficiency: results following 5 years of treatment
- Normal bone density but altered geometry in girls with Turner syndrome
- Newborn screening for inborn errors of metabolism in a northern Chinese population
- Evaluation of serum telomerase activity in normal-weight young girls with polycystic ovary syndrome and its relation to metabolic parameters
- Early onset of puberty during COVID-19 pandemic lockdown: experience from two Pediatric Endocrinology Italian Centers
- Using change in predicted adult height during GnRH agonist treatment for individualized treatment decisions in girls with central precocious puberty
- Short Communications
- Long-term experience with the use of a single histrelin implant beyond one year in patients with central precocious puberty
- Relationships among biochemical measures in children with diabetic ketoacidosis
- Case Reports
- Hyperthyroidism in McCune–Albright Syndrome – a case report
- Sexual precocity in the setting of parental use of a compounded testosterone cream: case report and review of the literature
- Intracardiac thrombosis following intravenous zoledronate treatment in a child with steroid-induced osteoporosis
- Identification of a novel mutation in the ALDOB gene in hereditary fructose intolerance
Artikel in diesem Heft
- Frontmatter
- Editorial
- Thyroid – what is a healthy thyroid function test?
- Review
- Thyroid storm in pediatrics: a systematic review
- Opinion Paper
- DSD/intersex: historical context and current perspectives
- Original Articles
- Predictive value of 6 h postoperative parathyroid hormone level on permanent hypoparathyroidism in pediatric total thyroidectomy: a pilot study
- Evaluation of a nurse-led counselling intervention on selected outcome variables for parents of children with congenital adrenal hyperplasia
- The relationship between estrogen and subsequent growth restriction among adolescents with heavy menstrual bleeding at menarche
- An open-label extension of a phase 2 dose-finding study of once-weekly somatrogon vs. once-daily Genotropin in children with short stature due to growth hormone deficiency: results following 5 years of treatment
- Normal bone density but altered geometry in girls with Turner syndrome
- Newborn screening for inborn errors of metabolism in a northern Chinese population
- Evaluation of serum telomerase activity in normal-weight young girls with polycystic ovary syndrome and its relation to metabolic parameters
- Early onset of puberty during COVID-19 pandemic lockdown: experience from two Pediatric Endocrinology Italian Centers
- Using change in predicted adult height during GnRH agonist treatment for individualized treatment decisions in girls with central precocious puberty
- Short Communications
- Long-term experience with the use of a single histrelin implant beyond one year in patients with central precocious puberty
- Relationships among biochemical measures in children with diabetic ketoacidosis
- Case Reports
- Hyperthyroidism in McCune–Albright Syndrome – a case report
- Sexual precocity in the setting of parental use of a compounded testosterone cream: case report and review of the literature
- Intracardiac thrombosis following intravenous zoledronate treatment in a child with steroid-induced osteoporosis
- Identification of a novel mutation in the ALDOB gene in hereditary fructose intolerance
