Children's experiences of information, advice and support from healthcare professionals when their parent has a cancer disease - experiences from an oncological outpatient department

Golsäter, Marie; Knutsson, Susanne; Enskär, Karin

doi:10.1016/j.ejon.2020.101893

Cited by 5 publications

(8 citation statements)

References 40 publications

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“…The results of the current study show that adolescents and young people want greater involvement from HCPs in general and increased support related to information in particular, which is consistent with previous research [61][62][63][64][65]. Furthermore, adolescents and young people express a need to be seen and acknowledged by HCPs; they should be met with compassion, in addition to professional competence, which is also supported by recent research [65].…”

Section: Discussionsupporting

confidence: 90%

Adolescents’ and young people’s needs and preferences for support when living with a parent with life-threatening cancer: a grounded theory study

et al. 2022

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Background Living with a parent facing life-threatening illness and losing a mom or dad at a young age can cause both short- and long-term health problems. Without satisfactory support, adolescents’ and young people are at risk of developing low self-esteem, behavioural difficulties (e.g., anger and aggression), long-term illness or premature death caused by severe mental illness, substance abuse, self-harm and suicide attempts. The aim of this study was to explore adolescents’ and young people’s needs and preferences for support as they live with a parent with life-threatening cancer. Methods Qualitative interviews were conducted with 10 respondents (17–24 years) in Norway and Sweden. Data were analysed through grounded theory according to Charmaz. Results Adolescents’ and young peoples’ needs and preferences for support were described through the main category ‘To feel safe and secure and to be prepared’ and further broken down into five subcategories ‘Relationships in the immediate family—balancing support and protection’; ‘The social network—support and normalcy in a carefully selected group’; ‘Maintaining everyday life—challenges in school and working life’; ‘The right support at the right time—competence, trust and continuity in meeting health care professionals’; and ‘Support outside the home—an opportunity for full transparency’. Conclusion Adolescents’ and young peoples’ preferences for support when living with a parent facing life-threatening illness are individual and unique, but they share a common need to feel safe and secure and to be prepared. Adolescents and young people express that they primarily want support from parents and friends, but they also want support from health care professionals, especially in situations when the ill parent becomes worse. Therefore, it is of the utmost importance for health care professionals to identify the most vulnerable adolescents and young people by mapping their social networks and paying extra attention to their needs for support when there is deterioration in the parent’s illness state. This study also highlights the importance for health care professionals to establish a good relationship with adolescents and young people to meet their needs and preferences for support. In addition, information and support are needed in a timely manner and adapted to the life-threatening ill parent’s illness state and individual’s needs and preferences to optimise preparedness.

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Section: Discussionsupporting

confidence: 90%

Adolescents’ and young people’s needs and preferences for support when living with a parent with life-threatening cancer: a grounded theory study

et al. 2022

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“…In some cases, they did collaborate with other professionals, but this collaboration was largely coincidental. A previous study has highlighted the importance of interprofessional collaboration around children who are next of kin; the authors found that established structures for collaboration were needed for optimal care for both children and parents [13], which seems to be the case also in the current settings. The PHNs in the present study requested more collaboration, especially with teachers but also other professionals, which is an important issue for stakeholders to take into consideration when organizing sustainable support for children who are next of kin.…”

Section: Discussionmentioning

confidence: 94%

“…The PHNs in the present study requested more collaboration, especially with teachers but also other professionals, which is an important issue for stakeholders to take into consideration when organizing sustainable support for children who are next of kin. In addition, the study findings suggest that there is often a lack of interaction between the specialist and municipal health services around the follow up of children who are next of kin, which could be another area for improvement to ensure that children who are next of kin receive the necessary support [13].…”

Section: Discussionmentioning

confidence: 99%

“…Furthermore, previous research has found that children who have parents with physical illness and disability report higher level of worry about their parents, but less caregiving discomfort than children of parents with mental illness [11]. Golsäter et al [13] describe that children who are next of kin of parents with cancer need information and knowledge about their parent's situation. They argue that it is important that the information is based on the ill parent's specific situation (i.e., their disease, treatment and care) and tailored to the child's individual needs.…”

mentioning

confidence: 99%

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Public health nurses’ experiences working with children who are next of kin: a qualitative study

Granrud

Sandsdalen

Anderzén‐Carlsson

et al. 2022

BMC Health Serv Res

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Background There are a substantial number of children who are the next of kin of parents suffering from illness or substance abuse. These children can experience emotional and behavioral problems and may need support from professionals. In Norway, the specialist health service in hospitals is required to have a designated practitioner in each department to ensure support for and follow up of children who are next of kin; however, this is not regulated by law in the health care in the municipalities. The aim of this study was to explore public health nurse’s experiences working with children who are next of kin. Methods Qualitative interviews were conducted with 10 public health nurses working in the child health clinic and the school health service in four municipalities. Data were analysed using content analysis. Reporting of this study is conducted in accordance to COREQ’s checklist. Results The analysis resulted in one main theme: ‘Lack of guidelines and routines among public health nurses working with children who are next of kin’. The main theme consisted of four categories: (1) identifying children who are next of kin are incidental; (2) public health nurses must be observant and willing to act; (3) communication is an important tool; and (4) follow up over time is not always provided. Conclusion The public health nurses experienced uncertainty concerning how to identify and follow up children who are next of kin but were vigilant and willing to act in the children’s best interest. Doing so necessitated collaboration with other professionals. The need for guidelines around the role and responsibilities for the public health nurse were emphasized. The knowledge provided by the current study offers valuable insight into strengths and limitations in the support of children who are next of kin and can inform stakeholders in organizing sustainable support for this group.

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“…Covid). However, more generally, it appears that visitation restrictions have decreased as family members insist on access for their children and grandchildren, the media highlights the importance of family involvement, and research shows evidence of the benefits of children's visits to health care units, such as feelings of belonging and reduced suffering [13][14][15][16]. But nurses [17][18][19][20][21] and parents [22,23] are still ambivalent about children's visits and participation depending on several different reasons (Table 1).…”

Section: Caritas In a 'Children As Relatives' Perspectivementioning

confidence: 99%

The urge for a caritative caring science in a wider perspective

Knutsson

2024

Scandinavian Caring Sciences

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Children's experiences of information, advice and support from healthcare professionals when their parent has a cancer disease - experiences from an oncological outpatient department

Cited by 5 publications

References 40 publications

Adolescents’ and young people’s needs and preferences for support when living with a parent with life-threatening cancer: a grounded theory study

Adolescents’ and young people’s needs and preferences for support when living with a parent with life-threatening cancer: a grounded theory study

Public health nurses’ experiences working with children who are next of kin: a qualitative study

The urge for a caritative caring science in a wider perspective

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