Children and adolescents’ preferences for support when living with a dying parent – An integrative review

Aim To identify and synthesize the evidence base regarding children and adolescents’ preferences for support when living with a dying parent. Design Integrative literature review study. Methods Searches were conducted in PubMed, CINAHL, PsycINFO, the Cochrane Library, Sociological Abstracts and Scopus, between 1 October 2019 and May 2021. Data were analysed and synthesized using integrative thematic analysis according to the analysis stages specified by Whittermore and Knafl. Results Twenty-two articles were identified. Children and adolescents’ preferences for support were described through one overarching theme, Striving to achieve control and balance, together with six subthemes; “Involvement in the sick parent's care and treatment”; “Wanting to be with the sick parent but needing respite”; “Information must be continuous and individually adapted”; “emotional and communicative support from parents and family members”; “professional, compassionate and informative support”; and “support in friendships and opportunities to maintain normality.”publishedVersio

Children and adolescents’ preferences for support when living with a dying parent – An integrative review

Aim: To identify and synthesize the evidence base regarding children and adolescents’ preferences for support when living with a dying parent. Design: Integrative literature review study. Methods: Searches were conducted in PubMed, CINAHL, PsycINFO, the Cochrane Library, Sociological Abstracts and Scopus, between 1 October 2019 and May 2021. Data were analysed and synthesized using integrative thematic analysis according to the analysis stages specified by Whittermore and Knafl. Results: Twenty-two articles were identified. Children and adolescents’ preferences for support were described through one overarching theme, Striving to achieve control and balance, together with six subthemes; “Involvement in the sick parent's care and treatment”; “Wanting to be with the sick parent but needing respite”; “Information must be continuous and individually adapted”; “emotional and communicative support from parents and family members”; “professional, compassionate and informative support”; and “support in friendships and opportunities to maintain normality.”publishedVersio

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

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.publishedVersio

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

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.publishedVersio

Kunsten å skape et «normalt» liv. En kvalitativ studie av foreldres opplevelser av å ha et barn med hemofili

Bakgrunn: Hemofili er en medfødt kronisk tilstand som skyldes en defekt i blodlevringsfaktorene som krever tett oppfølging. Forskning peker på at foreldre til barn med kroniske sykdommer ofte møter på utfordringer i hverdagen og at dette kan være både fysisk og psykisk belastende. Hvordan foreldre til barn med hemofili i Norge opplever og håndterer barnets diagnose har vært lite studert. Hensikt: Hensikten med studien er å belyse hvordan et utvalg foreldre i Norge opplever det å ha et barn med hemofili, og hvordan det påvirker livsførselen. Teoretisk forankring: Studien knyttes til teori om mestring, helse og empowerment, og skyld. Metode: Studien har en kvalitativ tilnærming der det er gjort dybdeintervjuer av 15 foreldre til barn med hemofili i aldersgruppen fem til 12 år. Resultater: Studiens funn og fortolkninger synliggjør at foreldrene må balansere det å beskytte barnet mot blødninger og skader, samtidig som de skal fremme barnets selvstendighet. Foreldrene må inneha ressurser og kunnskap for å kunne håndtere den daglige behandlingen og tidvis ta vanskelige avgjørelser. Hjemmetransfusjon har bidratt til at foreldrene har blitt mer uavhengige, men barnets diagnose tilsier likevel at foreldrene er avhengige av å være i nærheten av helsepersonell i flere situasjoner. Det å vite hvem man skal informere om barnets diagnose og hvor mye informasjon man skal gi, synes også være utfordrende. Konklusjon: Studiens funn synliggjør at foreldre til barn med hemofili lever liv som innebærer at de tar store hensyn og strekker seg i mange retninger for å søke å skape et normalt liv for barna sine. Foreldrene i studien synes imidlertid å ha funnet metoder som gjør at de mestrer hverdage

When a parent is affected by a life-threatening illness : Exploring children’s and parents’ needs for support

This thesis explored the needs and preferences for support in families with children when one of the parents is affected by a life-threatening illness. In this thesis a variation of designs were used, from a literature review, to an interview study, a survey, and a long-term follow-up of an intervention. The results show that there are both individual and shared needs and preferences within a family when a parent has a life-threatening illness, and that HCP should adapt their approach to support accordingly. The children preferred practical and emotional involvement in their parent's illness, while at the same time needing respite and a sense of normality. Parents preferred more individualised illness-related information provided by the HCP, as well as more guidance on how to care for and support their children. Both children and parents who lack social support are particularly vulnerable. Therefore, it is important for healthcare personnel to systematically map families' social network. Moreover, continuous support should be offered throughout all stages of the parents' illness trajectory, including the time after death to meet their needs.Overall aim: the overall aim of this thesis was to explore needs and preferences for support in families with children, when one parent is affected by a life-threatening illness. Methods: Study I involved children to a parent with a life-threatening illness and their needs and preferences for support through an integrative review. An interview study that focused on preferences and needs for support was conducted with adolescents and young people, using Grounded theory (Study II). To describe parents’ perceptions of illness-related information and communication a cross-sectional survey study, based on severely ill parents and co-parents who have dependent children, was conducted as Study III. Study IV, was a qualitative interview study with parents, focused on perceptions of the meaning of a family-centred intervention, “The Family Talk Intervention,” in the long term, and analysed with a phenomenographic approach. Main findings: Children prefer and need to balance involvement in their parent's illness and treatment with the need to maintain some form of normality (I). It is important to survey the young people’s resources, in the form of their social network, and adapt the support according to the individual’s need and preferences for involvement (I, II). Parents could benefit from more illness and treatment related information, the physical and psychological impact of the illness and who they can turn to with questions about care (III). FTI can help reduce feelings of loneliness and promote family communication from both short-term and long-term perspectives. However, timing is crucial, and support over a longer period of time is desired, especially when the parent has passed away (IV). Conclusion: When a parent with dependent children is affected by a life-threatening illness, each family member needs individually adjusted emotional, informational, instrumental and appraisal support according to their preferences. The support must be timed according to the shared and individual needs within the family, and it should be continuous throughout the entire illness process, including the time after death

When a parent is affected by a life-threatening illness : Exploring children’s and parents’ needs for support

This thesis explored the needs and preferences for support in families with children when one of the parents is affected by a life-threatening illness. In this thesis a variation of designs were used, from a literature review, to an interview study, a survey, and a long-term follow-up of an intervention. The results show that there are both individual and shared needs and preferences within a family when a parent has a life-threatening illness, and that HCP should adapt their approach to support accordingly. The children preferred practical and emotional involvement in their parent's illness, while at the same time needing respite and a sense of normality. Parents preferred more individualised illness-related information provided by the HCP, as well as more guidance on how to care for and support their children. Both children and parents who lack social support are particularly vulnerable. Therefore, it is important for healthcare personnel to systematically map families' social network. Moreover, continuous support should be offered throughout all stages of the parents' illness trajectory, including the time after death to meet their needs.Overall aim: the overall aim of this thesis was to explore needs and preferences for support in families with children, when one parent is affected by a life-threatening illness. Methods: Study I involved children to a parent with a life-threatening illness and their needs and preferences for support through an integrative review. An interview study that focused on preferences and needs for support was conducted with adolescents and young people, using Grounded theory (Study II). To describe parents’ perceptions of illness-related information and communication a cross-sectional survey study, based on severely ill parents and co-parents who have dependent children, was conducted as Study III. Study IV, was a qualitative interview study with parents, focused on perceptions of the meaning of a family-centred intervention, “The Family Talk Intervention,” in the long term, and analysed with a phenomenographic approach. Main findings: Children prefer and need to balance involvement in their parent's illness and treatment with the need to maintain some form of normality (I). It is important to survey the young people’s resources, in the form of their social network, and adapt the support according to the individual’s need and preferences for involvement (I, II). Parents could benefit from more illness and treatment related information, the physical and psychological impact of the illness and who they can turn to with questions about care (III). FTI can help reduce feelings of loneliness and promote family communication from both short-term and long-term perspectives. However, timing is crucial, and support over a longer period of time is desired, especially when the parent has passed away (IV). Conclusion: When a parent with dependent children is affected by a life-threatening illness, each family member needs individually adjusted emotional, informational, instrumental and appraisal support according to their preferences. The support must be timed according to the shared and individual needs within the family, and it should be continuous throughout the entire illness process, including the time after death

Children and adolescents' preferences for support when living with a dying parent : An integrative review

Aim: To identify and synthesize the evidence base regarding children and adolescents' preferences for support when living with a dying parent. Design: Integrative literature review study. Methods: Searches were conducted in PubMed, CINAHL, PsycINFO, the Cochrane Library, Sociological Abstracts and Scopus, between 1 October 2019 and May 2021. Data were analysed and synthesized using integrative thematic analysis according to the analysis stages specified by Whittermore and Knafl. Results: Twenty-two articles were identified. Children and adolescents' preferences for support were described through one overarching theme, Striving to achieve control and balance, together with six subthemes; "Involvement in the sick parent's care and treatment"; "Wanting to be with the sick parent but needing respite"; "Information must be continuous and individually adapted"; "emotional and communicative support from parents and family members"; "professional, compassionate and informative support"; and "support in friendships and opportunities to maintain normality.

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

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