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

Spatio-temporal composition and dynamics of zooplankton in the Kalmar Sound (western Baltic Sea) in 2009-2010

In pelagic food webs, zooplankton is the link between lower and higher trophic levels. It is thus essential to know how the zooplankton community structure varies with its environment. We investigated the seasonal and spatial variation in the zooplankton diversity and community structure during two consecutive years in the Kalmar Sound, along the Swedish east coast, an area with a strong bathymetric gradient and of high ecological importance for e.g. commercial fish species. Two zooplankton communities were identified in the area: a coastal/estuarine community in the south and an open-water community in the north. They were separated mainly by differing salinity and temperature conditions. Biodiversity increased from spring to autumn and was higher in the open waters. © 2014.C. Díaz-Gil, M. Werner, O. Lövgren, O. Kaljuste and M. Casini were partially funded by the Swedish PLAN FISH project, financed by the Swedish Environmental Protection Agency and the Swedish Agency for Marine and Water Management. C. Díaz-Gil was also funded by the EU Erasmus Program for international mobility of studentsPeer Reviewe

Spatio-temporal composition and dynamics of zooplankton in the Kalmar Sound (western Baltic Sea) in 2009–2010

In pelagic food webs, zooplankton is the link between lower and higher trophic levels. It is thus essential to know how the zooplankton community structure varies with its environment. We investigated the seasonal and spatial variation in the zooplankton diversity and community structure during two consecutive years in the Kalmar Sound, along the Swedish east coast, an area with a strong bathymetric gradient and of high ecological importance for e.g. commercial fish species. Two zooplankton communities were identified in the area: a coastal/estuarine community in the south and an open-water community in the north. They were separated mainly by differing salinity and temperature conditions. Biodiversity increased from spring to autumn and was higher in the open waters

Saknar dig! : Till dig som förlorat ett syskon i cancer

den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Tanken med skriften är att ge stöd till dig som förlorat en bror eller syster i cancer.Informationsskrift från Barncancerfonden framtagen i samarbete med Malin Lövgren.</p

När det värsta har hänt : Hur föräldrar kan stötta syskon som mist

Den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Syftet med skriften är att ge föräldrar stöd i hur de kan möta syskon som mist en bror eller syster i cancer.Informationsskrift från Barncancerfonden framtagen i samarbete med Malin Lövgren.</p

Symtom, besvär och tid hos kvinnor och män med lungcancer

Background: Many patients with lung cancer (LC) are diagnosed in late cancer stages, with palliative needs due to symptom burden. Although LC is increasing in women, few studies have focused on gender-related differences in symptoms and other concerns. One aim of this thesis was therefore to examine symptoms and other issues potentially causing distress in men and women with LC (sub-study I-III) and how well these issues are assessed by commonly used assessment instruments (sub-study III). As this patient group generally has short survival times, a further aim was to examine potential delays in the care trajectory (sub-study I) as well as how these patients experienced time during their first year with LC (sub-study IV). Methods: Sub-study I was based on data from medical records and included 314 patients with LC. Sub-study II-IV included patients with inoperable LC, using data derived from EORTC QLQ C- 30+LC13 (sub-study II) (N=159), an open question: what do you perceive as most distressing at present? (sub-study III) (N=343) and qualitative interviews with 35 patients (sub-study IV). Analysis strategies included descriptive and inferential statistics (sub-study I-III), as well as content analysis (sub-study III-IV). Results: Patients reported many, varied and intense symptoms at all time-points studied. Patients also reported many issues which were distressing during their first year with LC. Most of these concerns could be related to somatic and psychosocial problems, but 27% of the patients also reported concerns categorized as related to contact with the health care system (HCS) as causing most distress for them at some point during their first year with LC. Men and women generally reported similar symptoms and other concerns. Those differences which were found between men and women were often psychosocial and were reported more often by women close to diagnosis. Differences were not always related to sex alone but also to other factors in the patients life situation, such as age, education and civil status. Women <65 years reported more problems related to contact with the HCS. Between 55-59% of all distressing concerns reported in response to an open question were judged as being clearly assessed by three self-reported instruments commonly used for cancer patients. The results also showed extensive time intervals in the care trajectory for these patients, often in excess of recommendations by the Swedish LC study group. Patients described experiencing a lack of time in the HCS leading to long waiting times, limited time for patient-professional contact and poor coordination with risk for errors. Waiting both caused and reinforced the uncertainty inherent in patients situations. Limited time for patient-professional contacts was equated with little care for the person, rather than the LC case . Patients also described existential aspects of their changed perception of time including a re-evaluation of their future and reprioritization of their use of time. Conclusion: This thesis clarifies a need for a more efficient LC care trajectory. More systematic assessment and management of patients concerns is also needed. Problems related to contact with the HCS should be highlighted in both research and clinical practice. This thesis further indicates the need for time for care that is relational and unpredictable. Patients ways of viewing and prioritizing time during this severe sickness can be seen as being in conflict with how the HCS allocated time to patients. Even if this thesis highlights similarities and differences in symptoms and other concerns between women and men with LC, there is still a need of research about what these problems mean for men and women with LC in their daily life

Jag då! : Till dig som har ett syskon med cancer

Den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Den här skriften vänder sig till dig som har en bror eller syster med cancer och är tänkt att ge stöd, när livet ställs på ända.Informationsskrift från Barncancerfonden framtagen i samarbete med Malin Lövgren.</p