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Parents' experience when their child has chronic abdominal pain: a qualitative study in Norway.

ABSTRACT: OBJECTIVE:Functional abdominal pain occurs frequently in children and adolescents. It is an exclusion diagnosis; somatic diseases have to be ruled out. However little explanation is given for why the child is experiencing pain. The aim was to explore the experiences of parents of children with chronic abdominal pain discharged from hospital without a somatic explanation. DESIGN:The study has a qualitative design. The open questions concerned pain experiences and management. Interviews were conducted at the hospital, at the parents' workplace or in their homes, audiotape recorded and transcribed. A descriptive content analysis was used to analyse the transcribed text. SETTING:Parents of children referred from general practice located in urban and rural areas in two municipals in Norway. PARTICIPANTS:Fourteen parents of children with functional abdominal pain aged 5-15 years. RESULTS:Fourteen parents participated. Some explained that their child's disability glued the parents together on a common project to help the child. Other parents could tell that siblings got less attention and complained about too much fuss during pain. Parents wished for diagnosis that could be treated efficiently. Some were still anxious that an undetected condition triggered pain. They prompted their doctor to do further examinations. However, some parents knew that social factors could inflict pain and were concerned that their child was unable to distinguish sensations like anxiety and 'butterfly' tensions from physical pain. The parents and children needed professional guidance on how to manage the pain . CONCLUSION:The doctor's consultation should not end at the diagnosis of functional abdominal pain. Doctors may help these families further by focusing on pain management strategies.

SUBMITTER: Brodwall A

PROVIDER: S-EPMC5950638 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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Parents' experience when their child has chronic abdominal pain: a qualitative study in Norway.

Brodwall Anne A Glavin Kari K Lagerløv Per P

BMJ open 20180510 5

<h4>Objective</h4>Functional abdominal pain occurs frequently in children and adolescents. It is an exclusion diagnosis; somatic diseases have to be ruled out. However little explanation is given for why the child is experiencing pain. The aim was to explore the experiences of parents of children with chronic abdominal pain discharged from hospital without a somatic explanation.<h4>Design</h4>The study has a qualitative design. The open questions concerned pain experiences and management. Interv ...[more]

PMID: 29748345

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Project description:BackgroundPrior to the COVID-19 pandemic, parents of infants in the Neonatal Intensive Care Unit (NICU) frequently reported high levels of stress, uncertainty, and decreased parenting confidence. Early research has demonstrated that parents have had less access to their infants in the hospital due to restrictions on parental presence secondary to the pandemic. It is unknown how parents have perceived their experiences in the NICU since the beginning of the COVID-19 pandemic. The purpose of this study was to describe the lived experience of parents who had an infant in the NICU in the context of the COVID-19 pandemic to inform healthcare providers and policy makers for future development of policies and care planning.MethodsThe study design was a qualitative description of the impact of the COVID-19 pandemic on parents' experiences of having an infant in the NICU. Free-text responses to open-ended questions were collected as part of a multi-method study of parents' experiences of the NICU during the first six months of the pandemic. Participants from the United States were recruited using social media platforms between the months of May and July of 2020. Data were analyzed using a reflexive thematic approach.FindingsFree-text responses came from 169 parents from 38 different states in the United States. Three broad themes emerged from the analysis: (1) parents' NICU experiences during the COVID-19 pandemic were emotionally isolating and overwhelming, (2) policy changes restricting parental presence created disruptions to the family unit and limited family-centered care, and (3) interactions with NICU providers intensified or alleviated emotional distress felt by parents. A unifying theme of experiences of emotional distress attributed to COVID-19 circumstances ran through all three themes.ConclusionsParents of infants in the NICU during the first six months of the COVID-19 pandemic experienced emotional struggles, feelings of isolation, lack of family-centered care, and deep disappointment with system-level decisions. Moving forward, parents need to be considered essential partners in the development of policies concerning care of and access to their infants.

Project description:Zellweger spectrum disorders (ZSDs) are rare, debilitating genetic diseases of peroxisome biogenesis that require constant management and lifelong care. Nevertheless, the experience of family caregivers for children diagnosed with ZSD is not well understood. In this study, we sought to characterize the emotional experience of ZSD family caregivers. Three 90-min focus groups were conducted with thirty-seven parents (25 mothers and 12 fathers) of children with ZSD during a family advocacy conference. Focus groups were arranged by age of proband (Group 1: 0-4?years, Group 2: 5-10?years, Group 3: >11?years). Audio recordings of focus groups were transcribed and analyzed using software for coding purposes. Analyzed content was validated using peer debriefing, member checking, and method triangulation. Focus group results showed that nearly a third of ZSD caregivers described their overall emotional experience as a "rollercoaster." Additionally, three interconnected themes were identified: 1) range of emotions, 2) stressors, and 3) coping. Feeling overwhelmed and devastated were the most frequently described emotional responses. Corresponding stressors to these emotions included the burden of caregiver tasks associated with ZSD, and negative interactions with healthcare professionals. The most common coping strategies were acceptance of limitations of the diseases, redefining "normal" in the parenting experience, and advocating on behalf of the child and the patient community. This study underscores the profound emotional impact on parents who are caregivers for children with ZSDs, highlighting the utility of patient community feedback and qualitative approaches to fully characterize the overall family experience. Simple, targeted approaches focusing on improved communication between healthcare professionals and families, as well as offering resources for emotional support may greatly improve the lives of families living with ZSD and other rare pediatric diseases.

Dataset Information

Parents' experience when their child has chronic abdominal pain: a qualitative study in Norway.

Publications

Parents' experience when their child has chronic abdominal pain: a qualitative study in Norway.

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