Meeting the Needs of Parents of Children With Scoliosis: A Qualitative Descriptive Study
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ABSTRACT:
SUBMITTER: Willson L
PROVIDER: S-EPMC8593288 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BACKGROUND:Bronchiolitis affects more than one-third of children less than age 2 years and can cause substantial anxiety for parents, leading them to seek information on how to care for their sick child. The aim of our qualitative study was to explore the information needs and preferences of parents caring for a child with bronchiolitis. METHODS:We used a qualitative descriptive approach. Participants were recruited by means of purposive sampling from Oct. 1, 2017, to Mar. 15, 2018 from the Stollery Children's Hospital emergency department, a specialized pediatric emergency department in Edmonton. Individual semistructured interviews were conducted. RESULTS:Fifty-three parents were recruited to participate, of whom 30 could not be reached after 4 contact attempts and 8 refused. Thus, 15 parents participated (16 children). Three major themes were identified: 1) parents' information needs about bronchiolitis, 2) parents' preferred information sources and 3) parents' preferred information delivery formats. Participants indicated that they want and require credible, easy-to-understand information about bronchiolitis in a variety of formats, and especially valued information obtained directly from a health care professional or an evidence-based website. INTERPRETATION:This study provides important information about parents' information needs concerning bronchiolitis in children. Identifying the information that parents want and value in relation to acute pediatric illnesses is imperative to developing innovative educational approaches for parents that reflect patient-centred care.
| S-EPMC6944130 | biostudies-literature
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.
| S-EPMC7938468 | biostudies-literature
Project description:Aims and objectivesTo explore the home care experiences of caregivers taking care of CHD children before and after cardiac surgery.BackgroundDespite the prevalence of congenital heart disease (CHD) in childhood, little is known about the experiences and impacts on the children and their caregivers after CHD diagnosis and surgery. Such knowledge is needed for meaningful support.DesignA qualitative descriptive study.MethodsTwenty-two caregivers of CHD children undergoing cardiac surgery participated in semi-structured interviews at a University Children's Hospital in China. Data were collected by an experienced and trained interviewer. Qualitative content analysis was chosen to describe the experiences of the caregivers.ResultsCaregivers of CHD children experienced significant demands. After the children underwent their CHD operations, the caregivers experienced complex psychological feelings and excessive stress impacting upon theirlives. In addition, caregivers constantly adapted their roles with self-fulfillment in caring activities.ConclusionsCHD surgery has a major impact on the emotions and daily lives of children and their caregivers. This study offers a framework for understanding the importance of actively listening to caregivers so coping strategies can be implemented.Relevance to clinical practiceTheexperiencesdescribed in this study contribute to a better understanding of the needs of caregivers whose children underwent CHD operations. They also provide valuable information to professional medical care staff that developfuture nursing assessments.
| S-EPMC6417691 | biostudies-literature
Project description:Aim:To explore the educational needs of nurses on children's pain management. Design:A descriptive qualitative study. Methods:Individual and group interviews were conducted among 28 nurses and four nurse managers at four hospitals in the Ashanti region of Ghana. The recorded interviews were later transcribed verbatim and thematically analysed based on a conceptual interest in the educational needs on paediatric pain management. Results:Nurses were acquainted with pain assessment of children who can verbally communicate. They mainly used drugs in treating pain and were familiar with the use of some non-pharmacological interventions. Notwithstanding, they desired to know more about pain assessment for children with non-functional speech. Additionally, they were interested in learning more about both drug and nondrug pain relief methods for children. The sampled nurses and nurse managers indicated diverse preferences on the nature of the paediatric pain educational programme based on their personal choices and working dynamics.
| S-EPMC7113495 | biostudies-literature
Project description:BackgroundA reproductive health implication of the increasing incidence of cancer among women is the impact of cancer treatment on fertility.ObjectiveAs patients are increasingly using the internet, particularly online forums, to seek and share experiences, our objective was to understand information needs about cancer treatment, fertility, and pregnancy of women with cancer as well as their caregivers.MethodsWe searched threads (original posts and responses) on four subreddit sites of Reddit ("r/Cancer," "r/TryingForABaby," "r/BabyBumps," and "r/Infertility") over a 5-year period between February 4th, 2014 and February 4th, 2019. Threads with original posts involving a lived experience or question regarding cancer treatment and female fertility and/or pregnancy or parenting/having children from the perspective of either patient or caregiver were included in our analysis. We analyzed threads using thematic analysis.ResultsFrom 963 Reddit threads identified, 69 were analyzed, including 56 with original posts by women with cancer and 13 with original posts by caregivers. From threads made by patients, we identified themes on becoming a part of an online community, impacts of cancer treatment and fertility concerns on self and social relationships, making family planning decisions, and experiences with medical team. We also identified a theme on the impact of cancer treatment and fertility concerns on caregivers.ConclusionsReddit provided a rich pool of data for analyzing the information needs of women facing cancer. Our findings demonstrate the far-reaching impacts of cancer treatment and fertility on physical, mental, and psychosocial health for both patients and their caregivers.
| S-EPMC7744261 | biostudies-literature
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.
| S-EPMC10249208 | biostudies-literature
Project description:BackgroundAcute otitis media (AOM) is the most common pediatric bacterial ear infection, affecting up to 75% of children younger than 5 years. Despite the high incidence of AOM in children, the condition presents a number of challenges to parents. The objectives of this study were to describe parents' experiences of taking care of a child with AOM and to identify their information needs to manage their child with AOM.MethodsA qualitative, descriptive design was used to gain insight into information needs of parents' of children with AOM. Participants were recruited from a specialized pediatric emergency department in a major Canadian urban center (Edmonton, Alberta). Individual semi structured interviews were conducted with 16 parents.ResultsSeven major themes were identified and described: (1) frequency of AOM, (2) symptoms of AOM experienced by children and parents, (3) AOM symptom management strategies used by parents, (4) parent's beliefs about AOM, (5) parent's satisfaction with treatment prescribed by physicians, (6) the effect of AOM on family's quality of life, and (7) parent's information needs about AOM. Findings indicate that AOM has considerable negative outcomes for both children and families and that parents would benefit from having more evidence-based resources.ConclusionsThis study provides important information around parents' experiences and information needs for pediatric AOM. Identifying parents' information needs and developing innovative and communicatively responsive educational approaches for parents are warranted that reflect patient-centered nursing care.
| S-EPMC6572929 | biostudies-literature
Project description:BackgroundParents of children with rare conditions increasingly use the Internet to source information on their child's condition. This study reports on part of a larger study whose overall aim was to identify the Internet use by parents when seeking information on their child's rare condition, with the specific purpose of using the findings to aid in the development of a website specifically designed to meet the parents' needs. It presents findings on why these parents use the Internet, the information and support content they source, and the impact these resources have on their capacity to care for and manage their child's condition.ObjectiveTo (1) ascertain parents' general Internet usage patterns, (2) identify the nature of the information parents most frequently searched for, and (3) determine the effect the Internet-sourced information had on parents of children with rare conditions.MethodsData collection was conducted in 2 parts: Part 1 was a focus group interview (n=8) to inform the development of the questionnaire, and Part 2 was a questionnaire (Web- and paper-based). All respondents (N=128) completed the questionnaire using the Internet.ResultsParents frequently and habitually used the Internet and social media to gather information on their child's condition. These Web-based resources provide parents with a parent-to-parent support platform that allows them to share their experiences and information with other parents, which, the respondents considered, improved their knowledge and understanding of their child's condition. The respondents also reported that these resources positively impacted on their decision making, care, and management of their child's condition. However, they reported receiving mixed responses when wishing to engage and share with health care professionals their Internet and social media interactions and information outcomes.ConclusionsThis study adds to the emerging body of research on the Internet use by parents of children with rare conditions to source information on their child's condition. The evolving and ever increasing parent-to-parent support systems via social media are impacting on parents' capacity to manage their children. Implications for practice include health care professionals' response to this knowledge and capacity shift, and the significance of these changes when interacting with parents. The key message of this study was that parents of children with rare conditions are habitual users of the Internet to source information about their children's conditions. Social media, especially Facebook, has an increasing role in the lives of these parents for information and support. Parents' interest in information gathering and sharing includes a desire for shared dialogue with health care professionals.
| S-EPMC5350458 | biostudies-literature
Project description:In this review, we consider the potential service needs of children of substance abusing parents based on what we know about the risk outcomes faced by these children and the parenting deficits often present in these families. Importantly, our review does not address the etiological role of parental substance abuse in children's negative outcomes but instead we discuss the complex inter-related risk factors that often co-occur with and exacerbate risk associated with parental alcohol and drug use. We first review studies showing the elevated risk that children of substance abusing parents face in general for poorer academic functioning; emotional, behavioral, and social problems; and an earlier onset of substance use, faster acceleration in substance use patterns, and higher rates of alcohol and drug use disorders. We then review studies showing contextual risk factors for children of substance abusing parents, including parenting deficits (less warmth, responsiveness, and physical and verbal engagement as well as harsher and more over-involved interaction styles), greater risk for child maltreatment, and less secure attachment patterns. We conclude with a discussion of future directions for research and guidelines for professionals working with children and their families where parental substance abuse is present.
| S-EPMC3676900 | biostudies-other
Project description:This study aimed to investigate the understanding and experiences of mothers who have suffered perinatal loss regarding their needs after being discharged from the hospital. Data were collected through semi-structured face-to-face and telephone interviews using purposive sampling with maximum diversity. The sample included 15 mothers and 6 midwives who had experienced fetal loss and perinatal bereavement. The interviews were audio-recorded and transcribed verbatim. Conventional content analysis was used to analyze the data. Sampling was conducted from July 2022 to March 2023, continuing until data saturation was reached. The study identified 2 main categories of needs for mothers who have experienced perinatal loss: continuous healthcare (including the Comprehensive Mother Tracking System, provision of psychological welfare, and educational needs) and provision of a support network, including "spouse and family support" and "peer and colleague support." The primary theme of this study was "Deliberating Care for Grieving Mothers." The study results indicate that mothers who experience perinatal loss require continuity of care after being discharged. Psychological screening and counseling support are essential for both parents. Considering the significant impact of spousal, familial, and community support on an individual's life, it is crucial to prepare the community to comprehend and embrace grieving parents.
| S-EPMC10859064 | biostudies-literature