Dataset Information

Meeting the Needs of Parents of Children With Scoliosis: A Qualitative Descriptive Study.

ABSTRACT: Needs of parents with children with scoliosis are complex and depend on their child's treatments. The purpose of this study was to identify needs of parents with children with scoliosis. This qualitative description involved interviews with parents of children at various stages of treatment. A convenience, then purposeful sample of 16 parents (12 mothers, two fathers, and two stepfathers) was interviewed; interviews were transcribed and analyzed using thematic analysis. Parents' needs included: Needing reliable medical information; Desiring information on complementary treatments; Wanting help in supporting and advocating for their child; Needing to protect the child and family; and Seeking connection and support. Although many parents' needs are being met, this study recommends a nursing role aimed at providing parents with reliable medical information, discussing alternative treatments, assisting parents in their role of supporting their child, helping parents in their advocacy efforts, and referring parents to appropriate connections.

SUBMITTER: Willson LR

PROVIDER: S-EPMC8593288 | biostudies-literature | 2021 Jan-Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Meeting the Needs of Parents of Children With Scoliosis: A Qualitative Descriptive Study.

Willson Leanne R LR Rogers Laura G LG Gingrich Nicole N Shearer Kathleen K Hryniuk Sarah Southon SS

Global qualitative nursing research 20210101

Needs of parents with children with scoliosis are complex and depend on their child's treatments. The purpose of this study was to identify needs of parents with children with scoliosis. This qualitative description involved interviews with parents of children at various stages of treatment. A convenience, then purposeful sample of 16 parents (12 mothers, two fathers, and two stepfathers) was interviewed; interviews were transcribed and analyzed using thematic analysis. Parents' needs included: ...[more]

PMID: 34796260

Similar Datasets

Project description:IntroductionCaring for a child with obsessive-compulsive disorder (OCD) can be extremely difficult, yet evidence-based support strategies for parents/carers are limited. A detailed understanding of parent support needs is an important first step in intervention development and qualitative research with this focus is currently lacking. In this study, the viewpoints of parents and professionals were used to understand support needs and preferences when caring for a child with OCD. This qualitative descriptive study formed part of a wider UK-based project aimed at developing better support for parents of children with OCD.MethodIndividual semi-structured interviews (and an optional one-week journal) with a purposive sample of parents of children and young people (CYP) with OCD, aged 8-18, and focus groups (or individual interviews where preferred) with a purposive sample of professionals supporting CYP with OCD. Data comprised transcripts of audio-recorded interviews and focus groups, and text from journals. Analysis was informed by the Framework approach involving inductive and deductive coding, supported by NVivo 12.0 software. Co-production methods were adopted throughout the research process, including the involvement of a parent co-researcher and charity collaborators.ResultsInterviews were undertaken with 20 parents, of which 16 completed a journal. Twenty-five professionals took part in a focus group or interview. Five key themes relating to parent support challenges and support needs/preferences were identified (1) Coping with the impact of OCD; (2) Getting help for my child; (3) Understanding parents' role; (4) Making sense of OCD; (5) Joined-up care.ConclusionParents caring for children with OCD have clear caregiver support needs which are currently not being met. Through triangulation of parent and professional accounts, this study has identified parent support challenges (e.g., emotional impact of OCD, visibility of caring role, misunderstanding about OCD) and support needs/ preferences (e.g., headspace/respite, compassion/sensitivity, guidance on accommodation) to lay the vital foundations for the development of effective parent support interventions. There is now an urgent need to develop and test an intervention to support parents in their caregiving role, with the aim of preventing and/or reducing their levels of burden and distress and ultimately, improving their quality of life.

Project description:BackgroundMany parents choose support such as Complementary and Alternative Medicine (CAM) for themselves and their children who have cancer. The aim of this paper is to describe, how parents who have children with cancer communicated with conventional health care providers about CAM, and what types and sources of information they would like to receive about CAM when the child was ill.MethodThis focused ethnography draws from in-depth, semi-structured interviews conducted with 22 families in Norway with 24 adult participants (two couples), including two individuals who had had cancer themselves. Four domains were explored in the data analysis: the use of CAM, advice from laypeople about CAM, communication with conventional health care providers about CAM, and parents' information needs about CAM.ResultsMany of the participants had personal experiences with CAM before the child received the cancer diagnosis. The health care providers did not raise the question about CAM in the consultations. However, when the parents raised the question, they were mostly met in a positive way. The participants did not receive any information about CAM at the hospital, which they would have appreciated. Instead, they received recommendations about CAM from laypersons, which were mostly rejected, as the advice was not in line with their health values/philosophy.ConclusionThe reason participants did not disclose CAM use is that physicians did not ask them about it. However, positive communication about conventional treatment facilitated fruitful conversations about CAM. The participants wanted information about CAM from authoritative sources, primary from health care providers at the hospital and the Children's Cancer Society. They demand information about risks and benefits when using CAM as well as whether CAM can improve the immune system, fight the cancer, and improve the quality of life of the family. An evidence-based decision aid is warranted to enable health care providers and parents of children with cancer to make well-informed decisions about CAM.

Project description:IntroductionThe World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be provided even when curative attempts are being utilised. In Papua New Guinea, as in other low- and middle-income countries there is a lack of services and training on PPC. This study aims to describe the characteristics of children with palliative care needs and to assess the perspectives of their parents and health care workers.MethodsA descriptive qualitative study was carried out over 5 months in 2022 at the Port Moresby General Hospital children's wards. Clinical information was gathered from the admission charts of children with life threatening and life limiting conditions and a recorded interview was carried out with the children's parents. A focus group interview with 10 experienced nurses caring for these children was video recorded. The recorded interviews were subjected to thematic analysis.ResultsTwenty children and their parents were included in this study. Nine had a cancer diagnosis and 11 had a chronic progressive condition. The common clinical characteristics of children with palliative care needs were pain (n = 9) and shortness of breath (n = 9), and most children had more than one symptom. Several themes were identified in the parent interviews. Most parents could not name their child's diagnosis, but they were able to correctly describe their child's condition using their own terms. Most parents felt involved in their child's management and were satisfied with the care provided. Parents were psychologically affected by their child's situation but were hopeful that God and the medicines would heal their child. Ten nurses were involved in a focus-group interview. Most nurses' understanding of palliative care was from experience not from formal training, but most felt confident in identifying the physical, emotional, and spiritual needs of the children. Understanding of analgesia was limited, as was the availability of appropriate medications included in the WHO Analgesic Ladder.ConclusionThere is a need for a systematic approach to palliative care in Papua New Guinea. Palliative care can be integrated into an overall approach to quality of paediatric care. It is relevant to a broad section of children with severe chronic or malignant conditions and can be carried out with limited resources. It does require some resources, further training and education, and increased provision of basic drugs for symptom control.

Dataset Information

Meeting the Needs of Parents of Children With Scoliosis: A Qualitative Descriptive Study.

Publications

Meeting the Needs of Parents of Children With Scoliosis: A Qualitative Descriptive Study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets