Abstract
Background
The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community ...health centres, within the specialist health care service and/or in the child’s home. Home is often the preferred place for families, and recommendations state that, whenever possible, the family home should be the centre of care for the child. The aim of this study is to systematically review the experiences and needs of families with children receiving palliative care at home.
Methods
We conducted a systematic review and searched the peer-reviewed databases CINAHL, Embase, PsycInfo and MEDLINE for articles published between January 2000 and October 2019. We included 23 studies emphasising the experience of family members when their child (0–18 years) received palliative care at home. We used a thematic analysis to identify relevant themes in the literature, and synthesised the findings from the different studies.
Results
The review represents the experiences of the families of almost 300 children with life-limiting (LL) and life-threatening (LT) conditions receiving palliative care at home. In general, the children’s mothers are interviewed, and seldom the sick children themselves or their siblings. Most families preferred staying at home since it made it easier to maintain a normal family life, was less stressful for the sick child, and meant that siblings could still attend school and be with friends. Families experienced a range of challenges due to the coordination of care, including a lack of support and adequately skilled staff with appropriate experience. Respite care was needed in order to cope with everyday life. Some studies were not specific concerning the place of care, and some relevant papers may have been omitted.
Conclusions
Families receiving PPC need organised, individualised support from a skilled PPC team. Respite care is necessary in order to manage a demanding home-care situation and parents need support for siblings. Privacy to be a family is a need, and many families need financial support. Future studies should focus on PPC at home in the perspectives of sick children and their siblings.
Aims and objectives
This study aims to describe conditions that may influence the development of identity in adolescents frequently using over‐the‐counter analgesics.
Background
Frequent ...self‐medication with analgesics among adolescents is associated with several physical pain points, low self‐esteem and low ambitions for the future. Continuous use of over‐the‐counter analgesics can keep adolescents from learning healthier coping strategies.
Design
Qualitative individual interviews with adolescents and their mothers were conducted and transcribed. Furthermore, they were analysed as dyads.
Setting and participants
Students aged 14–16 years in 9th and 10th grades in 10 Norwegian junior high schools self‐reporting at least weekly use of analgesics were asked to participate. Those who wanted to take part took a consent letter to their parents, also inviting the parent to participate.
Results
Six girls, two boys and their mothers were included. The teenagers were highly dependent on their mothers. They had often been bullied, lacked good relationships with peers, avoided conflicts and strived to be accepted. Their mothers felt solely responsible for their upbringing and showed great concern for all the pain experienced by their child. A close relationship between mother and child influenced how the adolescent managed their pain, including their use of over‐the‐counter analgesics. Three main themes were identified in the stories of mother and child: “Vulnerable adolescents,” “Mother knows best” and “Pain is a shared project.”
Conclusions
Pain among adolescents may be amplified by a difficult family situation and insecure relationships with peers. Strategies within the family may sustain pain as a shared project keeping the adolescent and main caregiver close together, and this might be hampering identity development. To help adolescents with pain and high consumption of over‐the‐counter analgesics, the adolescents’ relationship with parents must be considered in designing an intervention. Guidance on pain assessment, pain management, including appropriate use of over‐the‐counter analgesics, should be included.
There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed ...through their parents and not by siblings themselves.
This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3-29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen's lifeexistentials.
One overall theme, "What about me?", illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one's own.
The study revealed that siblings' own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings' needs.
In 2020, the Norwegian school curriculum was revised, introducing a new cross-curricular subject, Public Health, and Life Skills. The curriculum emphasizes collaboration between teachers and the ...school health service. Subsequently, a research project, Literacies for Health and Life Skills, was initiated at Oslo Metropolitan University. The aim was to develop a new approach to the subject. A part of the research was to explore perceptions about good and poor health among teacher students and public health nursing students.
This study has a qualitative design using auto-photography, group discussions and photo-elicitation interviews as methods to explore the students' views on health.
A analysis revealed three themes about good health in both student groups: Relaxation and tranquillity, belonging and relations, and enjoyment as important to health. Three themes about poor health emerged in both student groups: The ideal body and self-perception, you are as healthy as you feel, and the best in life is also the worst. The students' statements were characterized by underlying assumptions about health in society, with a focus on "healthism". No major differences between the student groups were found.
This study serves as a step towards increased understanding of health perceptions among future professionals working with children and adolescents.
Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about ...parents' experiences of their own QoL. The aim of this study was to explore parents' QoL when their child has a life-threatening or life-limiting condition.
The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice. In-depth interviews were conducted with 12 fathers and 12 mothers of children living with cancer or a genetic condition. A deeper understanding of parents' lived experiences was obtained through an adapted photo elicitation method. Two rounds of thematic analysis were conducted, covering both the photo elicitation data, and interview data.
The findings describe four themes related to parents' QoL: living a normal life, giving my child a good life, having time to fulfill siblings' needs, and feeling heard and respected in the health and social care system.
The complexity of elements shaping parents' QoL is evident. The interconnectedness between parents, the ill child, siblings, and interactions with the health and social care system, highlights the need to understand and address diverse aspects in enhancing parents QoL.
Being bullied and socially excluded interferes with the fundamental need for humans to belong to a social group, which is necessary for well-being. This might underpin pain and the use of ...non-prescription analgesics. The aim of the study was to gain insight into how social exclusion and bullying affect well-being in adolescents reporting frequent pain and high use of non-prescription analgesics. A phenomenological hermeneutical method based on in-depth interviews was used. Nineteen teenagers, 14-16 years of age voluntarily participated in the study. Those included had frequent pain and used non-prescription analgesics daily or several times a week. Bullying and social exclusion affects thoughts, feelings and attitudes and thereby the quality of life of the adolescents we interviewed. They described feelings such as sadness, loneliness and depression, and a sense of being an outsider among peers was common. It also appears that bullying has significant potential to spread in a school environment. The adolescents were self-aware and well-articulated. They conceptualised their experiences of being socially excluded and bullied. They described being socially excluded and bullied by peers as painful and they used non-prescription analgesics to alleviate pain. Teachers and health professionals should be aware of frequent pain and high use of non-prescribed analgesic medication as signs of psychosocial stress caused by social exclusion and bullying. Social exclusion and bullying should be systematically mapped, and targeted interventions implemented.
Social inequalities in health, health literacy, and quality of life serve as distinct public health indicators, but it remains unclear how and to what extent they are applied and combined in the ...literature. Thus, the characteristics of the research have yet to be established, and we aim to identify and describe the characteristics of research that intersects social inequality in health, health literacy, and quality of life. We conducted a scoping review with systematic searches in ten databases. Studies applying any design in any population were eligible if social inequality in health, health literacy, and quality of life were combined. Citations were independently screened using Covidence. The search yielded 4111 citations, with 73 eligible reports. The reviewed research was mostly quantitative and aimed at patient populations in a community setting, with a scarcity of reports specifically defining and assessing social inequality in health, health literacy, and quality of life, and with only 2/73 citations providing a definition for all three. The published research combining social inequality in health, health literacy, and quality of life is heterogeneous regarding research designs, populations, contexts, and geography, where social inequality appears as a contextualizing variable.
Abstract
Background
Measuring outcomes facilitates evaluation of palliative services for children, adolescents, and young adults (CAYAs) with life-limiting and/or life-threatening (LL/LT) conditions. ...Implementation of patient-reported, proxy-reported, or patient-centered outcome measures (hereafter PROMs) is recommended to ensure palliative services. The purpose of this scoping review was to provide an overview of PROMs relevant for CAYAs living with LL/LT conditions eligible for pediatric palliative care (PPC).
Methods
Arksey and O’Malley’s 6-stage scoping review framework was used to guide the review. The identified citations had to report on PROMs in any context including CAYAs with LL/LT conditions up to 25 years of age. A systematic search of Medline, EMBASE, CINAHL, APA PsycInfo, Health and Psychosocial Instruments, and AMED took place in January 2021 and was updated in June 2022. Citations were screened independently by pairs of researchers. The scoping review protocol was registered, and peer-review published.
Results
Of 3690 identified citations, 98 reports were included, of which the majority were from Western countries and about PROMs in CAYAs living with cancer or organ failure. A total of 80 PROMs were identified, assessing a range of phenomena, where quality of life and symptoms (especially pain) during the stage of ongoing care were the most frequent. There were only a few reports about outcome measures at time of diagnosis or in end-of-life care. CAYAs self-reported on the PROMs or collaborated with their parents in about half of the reports, while the remaining had proxies answering on behalf of the CAYAs. In the identified reports, PROMs were used to characterize a sample through cross-sectional or longitudinal research, and less often to assess effects of interventions.
Conclusion
The identified PROMs in the CAYA population eligible for PPC is characterized by studies in high-income countries during ongoing care, primarily in patients with cancer or organ failure. More research is needed in patients living with other LL/LT conditions, and during different stages of the disease course, especially at time of diagnosis, during transition to adulthood, and in end-of-life care. This scoping review of PROMs relevant for young patients eligible for PPC may inform future research about patient-/proxy-reported or patient-centered outcome measures in PPC.
Trial registration
Review registration: (
https://osf.io/yfch2/
) and published protocol (Holmen et al. Syst Rev. 10:237, 2021).
Abstract
Background
By sharing patient stories, health care professionals (HCPs) may communicate their attitudes, values and beliefs about caring and treatment. Previous qualitative research has ...shown that HCPs usually associate paediatric palliative care (PPC) with death or dying and that they find the concept challenging to understand and difficult to implement. Attending to HCPs’ stories may provide a richer account of their understanding of PPC. Thus, the aim of this study was to explore PPC stories narrated by HCPs to gain increased insight into their understanding of what PPC entails.
Methods
This qualitative study collected data from four focus group interviews with 21 HCPs from different units in two Norwegian hospitals. Stories told by the HCPs to illustrate their comprehension of PPC were analysed following thematic analysis procedures.
Results
Four themes were identified illustrating what PPC meant to the participants: creating spaces for normality, providing tailored support for the family, careful preparations for saying goodbye and experiencing dilemmas and distress. The stories centred on family care, particularly relating to dramatic or affective situations when the death of a child was imminent.
Conclusion
The stories reflect how the HCPs view PPC as a specific field of health care that requires particular professional sensitivity, including good communication, collaboration and planning. Thus, the HCPs in this study demonstrated knowledge about the core qualities needed to succeed in PPC. However, similar to previous research, the stories illustrate that how HCPs speak about PPC is strongly associated with end-of-life care, and by that the HCPs do not capture the breadth of the PPC concept. The findings highlight the importance of increasing knowledge about the meaning and content of PPC among HCPs in order to maintain quality of life for all children with life-limiting or life-threatening conditions throughout their illness trajectory.
Taking care of a child with special needs can be draining and difficult and require a lot of parental time and resources. The present study investigated the long-term sickness absence of parents who ...have children with spina bifida, cerebral palsy and Down syndrome compared to that of parents without a child with special needs.
The sample consisted of primiparae women who gave birth between 2001 and 2005 and the fathers of the children (N = 202,593). Data were obtained from the Medical Birth Registry of Norway (MBRN), which is linked to the Central Population Register, education and income registries and Historical Event Database (FD-Trygd) of Statistics Norway (SSB). The linkage data provide longitudinal data, together with annual updates on children and their parents. Statistical analyses were performed using difference-in-difference (DD) study design.
Caring for a child with special needs affected maternal sickness absence, particularly in the first year after the birth. The level of sickness absence of mothers caring for a child with spina bifida and cerebral palsy was greater than that of mothers caring for a child with Down syndrome. In contrast, the sickness absence of fathers caring for a child with special needs was, on average, comparable to that of fathers without a special-needs child in the post-birth period.
Caring for a child with special needs affected the long-term sickness absence of mothers but not fathers. The findings indicate that the burden of care in the case of children with special needs falls especially on the mother.
PDF
