Being a parent of a child with Down’s arthritis: an interpretative phenomenological analysis

Abstract

Purpose: To explore the parental impact and experiences of caring for a child with Down's arthritis (DA), an aggressive, erosive form of arthritis affecting children with Down syndrome. Materials and methods: Ten mothers of children with DA were interviewed via telephone. Interviews were guided using a semi-structured non-directive topic guide and ranged from 17 to 242 minutes in duration. Interpretative phenomenological analysis was the method of analysis. Results: Three superordinate themes were identified: "Struggle for Help," "Mothers Know Best," and "Daily Impacts." Common challenges included issues around child pain, communication, and challenges in accessing diagnoses and relevant healthcare services. Parents portrayed a reality characterised by ongoing struggles, particularly parents of nonverbal children and those living further from paediatric rheumatology services. Connecting with other parents of children with DA provided a vital source of emotional and informational support. Conclusions: Findings provide novel insight into the experience of being mother of a child with DA, highlighting regional healthcare disparities, the need for upskilling of healthcare professionals, and for increased public awareness. Further research is needed to better understand the impact of DA on fathers and siblings. Findings can contribute to development and provision of supports to children with DA and their families. ä IMPLICATIONS FOR REHABILITATIONHealthcare professionals need to be upskilled in the treatment of, and communication with, children with Down syndrome with chronic illnesses and their families. A specialised stream of care for children with Down's arthritis (DA) within paediatric rheumatology services may facilitate timely diagnosis and treatment and minimise risk of future complications. Formalised support services for children with DA and their families are needed to minimise emotional distress.

Adaptation at the Family Level in Families of Individuals With Down Syndrome: A Scoping Review

“…Six studies were categorized as negative/problem focused. The study by McDonagh et al (2021) is an example of a study that is negative/problem focused. Semi-structured interviews were conducted with 10 mothers living in the Republic of Ireland who have a child with DS who also has arthritis.…”

“…Across the 41 studies, researchers collected data from 5,989 respondents ( Table 5 ), 4,438 (78%) of whom were the child’s mother, with 9 studies focusing exclusively on mothers ( Alabri, 2023 ; AlJameel & AlKawari, 2021 ; AlJameel et al, 2020 ; Cless et al, 2017 ; Finkelstein et al, 2021 ; Jess et al, 2021 ; Korkow-Moradi et al, 2017 ; McDonagh et al, 2021 ; Pruktarat et al, 2021 ). Fathers were included in 29 studies and were the exclusive focus of two studies ( Pisula & Banasiak, 2020 ; Sheldon et al, 2021 ).…”

“…Most of the studies were cross-sectional; there were only two longitudinal studies (Choi & Van Riper, 2020;Robles-Bello & Sanchez-Teruel, 2022). With the exception of two grounded theory studies (Clark et al, 2020;Korkow-Moradi et al, 2017) and two phenomenological studies (Finkelstein et al, 2021;McDonagh et al, 2021), the qualitative studies were descriptive.…”

“…Lee et al, 2021). Nine of the 19 studies that included an assessment of family adaptation were qualitative (AlJameel et al, 2020;De Clercq, Prinzie, Swerts, et al, 2022;De Clercq, Prinzie, Warreyn, et al, 2022;Duarte et al, 2022;McDonagh et al, 2021;Persons, 2017;Shivers et al, 2019;Steffensen et al, 2022;Watanabe et al, 2021), nine were quantitative (AlJameel & AlKawari, 2021;Caples et al, 2018;Carrada et al, 2019;Choi & Van Riper, 2020;Darla & Bhat, 2021;Ilacqua et al, 2019;Jess et al, 2021;Ljubicic et al, 2020;Pruktarat et al, 2021), and one was mixed-methods (Bertrand, 2019). Ten of the studies included an assessment of family problem-solving communication and coping.…”

Down Syndrome-Associated Arthritis (DA): Diagnostic and Management Challenges

“…14 Others have also shown that families often are unaware that their child is displaying signs of arthritis, 8 and many present to care several times with inflammatory arthritis symptoms prior to a diagnosis of DA. 41 Even after diagnosis of DA, families report emotional, physical and financial challenges of being a parent and caregiver to an individual with intellectual disability and additional complex chronic disease 42 that affects mobility and requires immunosuppressive therapy in the setting of increased risk of infection. Other challenges to diagnosis of DA include musculoskeletal findings specific to individuals with DS such as hypotonia, ligament laxity and delayed motor skills that may mask signs of inflammatory arthritis.…”