A recurring rollercoaster ride: a qualitative study of the emotional experiences of parents of children with juvenile idiopathic arthritis

Gómez-Ramírez, Oralia; Gibbon, Michele; Berard, Roberta; Juřenčák, Roman; Green, Jayne; Tucker, Lori B.; Shiff, Natalie J.; Guzman, Jaime

doi:10.1186/s12969-016-0073-9

Cited by 43 publications

(55 citation statements)

References 45 publications

(61 reference statements)

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…This burden is exacerbated by having to manage symptoms and undertaking treatment that is also painful. The long‐term, persistent ups and downs associated with the unpredictable nature of joint disease and episodic physical disabilities associated with arthritis is a recognized emotional stress for parents . There is a paucity of data about the caregiver burden of joint disease in haemophilia care; however, Gringeri et al have stated that even a single haemarthrosis is a concern for the patient and his family.…”

Section: Discussionsupporting

confidence: 93%

“…The long-term, persistent ups and downs associated with the unpredictable nature of joint disease and episodic physical disabilities associated with arthritis is a recognized emotional stress for parents. 31 There is a paucity of data about the caregiver burden of joint disease in haemophilia care; however, Gringeri et al 14 have stated that even a single haemarthrosis is a concern for the patient and his family. The majority of boys in our study were treated with prophylaxis, with few reporting joint bleeds in the past 12 months.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)

et al. 2019

View full text Add to dashboard Cite

Introduction Treatment burden for the people with haemophilia has been documented, as has the burden of caring for a child with a common chronic disease such as asthma or diabetes. However, there remains a paucity of data about caregiver burden in haemophilia. Aims The aim of this study was to evaluate the impact of bleeding on caregivers of children with haemophilia. Caregiver burden was stratified by the clinical status of their child. Methods A multinational, non‐interventional study of caregivers of children with severe or moderate haemophilia, using the HEMOCABquestionnaire to evaluate caregiver burden. Results A total of 144 caregivers from seven EU countries participated in the study. Differences in caregiver burden were identified based on the clinical situation of the child. Greater burden was seen in caregivers of children who experienced joint bleeding in the preceding 12 months, or had target joints or reduced range of motion in most domains of the HEMOCAB. Caring for a child with a current inhibitor also caused significantly higher burden for caregivers when compared to caring for a child with tolerized inhibitor or without inhibitor. Caregivers of children with chronic pain reported significantly higher burden in all domains of the HEMOCAB except for “interaction with the father.” Conclusion Caregiver burden can be affected by the child's haemophilia status, particularly if joint health is impacted (eg bleeds, decreased mobility) or if the child suffers from chronic pain which was moderately correlated with joint bleeds.

show abstract

Section: Discussionsupporting

confidence: 93%

Section: Discussionmentioning

confidence: 99%

The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)

et al. 2019

View full text Add to dashboard Cite

show abstract

“…Within this context, perceived criticism of their ability and/or motivation can cause an immense amount of suffering for these mothers, and their anger, frustration, and sense of powerlessness with regard to health care professionals are well documented (e.g., Gómez‐Ramírez et al , 2016; Livermore, Eleftheriou, & Wedderburn, 2016; Mulligan et al ., 2018; Sallfors & Hallberg, 2003). Elbinoune et al (2017) describe disagreements between mothers and professionals regarding care.…”

Section: Discussionmentioning

confidence: 99%

From ‘neurotic’ to ‘managing’ mother: The ‘medical career’ experienced by mothers of a child diagnosed with Juvenile Idiopathic Arthritis

Waite-Jones

Swallow

Madill

2020

British J Health Psychol

View full text Add to dashboard Cite

ObjectiveDespite increased research into how caring for a child diagnosed with juvenile idiopathic arthritis (JIA) affects mothers, more needs to be known about ways in which such experiences transform their lives. Insight into the experiences of such mothers was sought through analysis of interviews with eight mothers and one father caring for a child with JIA. DesignThe study is situated within a larger project involving families with a child with JIA. A social constructionist approach was adopted and grounded theory including a ‘negative case,’ guided gathering and analysing data. Individual, semi‐structured interviews were conducted based on the research question: ‘What is it like to be the mother of a child with juvenile idiopathic arthritis?’ ResultsFindings suggest that mothers find difficulty living up to the ‘ideal mother’ expected within Western society when forced to provide competing demands of age‐related, yet illness‐relevant care. The unpredictable nature of JIA means mothers face a lack of understanding from professionals so become hyper‐vigilant, ‘battling’ on behalf of their ill child. A self‐perpetuating loop develops if this is misperceived as being overprotective, leaving mothers vulnerable to being judged ‘neurotic’. However, with experience, often at an emotional cost, such mothers’ confidence in managing the competing demands of caring for their ill child increases such they can navigate a positive journey from ‘neurotic’ to ‘managing’ mother. ConclusionsUnderstanding this process could help health care professionals reduce stressful experiences faced by mothers when caring for a chronically ill child. What is already known on this subject? Mothers of chronically ill children are often diagnosed with anxiety and depression. Such mothers will have taken over managing their child's condition, and this can include negative experiences within the health care system. Qualitative methods enable deeper understanding of the experiences of mothers of chronically ill children. What does the study add? Potentially gendered position of mothers of children with chronic conditions. Taken for granted assumptions implicitly underpin interactions between mothers and some professionals. Greater partnership between mothers and professionals ultimately improves the care of the ill child.

show abstract

“…Britton & A. Moore, 2002; C. Britton & A. Moore, 2002; Gomez-Ramirez et al, 2016; Jerrett, 1994; Jones, Rodger, Broderick, & De Monte, 2009; Knafl, Leeman, Havill, Crandell, & Sandelowski, 2015; McNeill, 2004; Stinson et al, 2012; Waite-Jones & Madill, 2008). The majority of these studies involve parents of 6-to-18-year-old children diagnosed 1–16 years prior to the time of interview, or are limited to specific experiences (e.g., parents’ emotional experience).…”

Section: Introductionmentioning

confidence: 99%

Struggling in the Dark to Help My Child: Parents' Experience in Caring for a Young Child with Juvenile Idiopathic Arthritis

Yuwen

Lewis

Walker

et al. 2017

Journal of Pediatric Nursing

View full text Add to dashboard Cite

Purpose The purpose of this study is to describe parents’ experiences in caring for 2–5-year-old children with juvenile idiopathic arthritis (JIA). Design and methods A qualitative study using single-occasion in-depth interviews was conducted. Nine parents (eight mothers and one father) were interviewed in-person or via telephone. Data were analyzed using inductive content analysis. Methods used to protect the trustworthiness of study results included maintenance of an audit trail, peer debriefing, and member checks. Results The core construct Struggling in the Dark to Help My Child explained parents’ experience in six domains: not knowing, trying to reach out in the dark, feeling my child’s pain, working out the kinks to stay on top to manage, feeling drained by the whole process, and being hard on the entire household. Parents struggled with the unknown, searched for resources, witnessed their child’s suffering without knowing how to help, and tried every possible way to stay on top of the child’s illness and treatment, even when they felt drained physically and emotionally. JIA not only consumed their lives, but also affected the entire family, including the siblings and spouse, and the relationships among family members. Conclusion and implications Findings highlight the day-to-day lived challenges parents face when caring for a young child with JIA. Healthcare providers including nurses need to assess the particular needs of an ill child and parents as well as the impact of the illness on the physical and psychosocial health of the entire family so that proper resources can be provided.

show abstract

A recurring rollercoaster ride: a qualitative study of the emotional experiences of parents of children with juvenile idiopathic arthritis

Cited by 43 publications

References 45 publications

The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)

The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)

From ‘neurotic’ to ‘managing’ mother: The ‘medical career’ experienced by mothers of a child diagnosed with Juvenile Idiopathic Arthritis

Struggling in the Dark to Help My Child: Parents' Experience in Caring for a Young Child with Juvenile Idiopathic Arthritis

Contact Info

Product

Resources

About