Incidence of incurable disease and disability has been increasing in the Western world in recent years. Parallel to this increase, survival rates for adolescents and young adults with life threatening illness, specifically cancer, have not improved relative to younger and older age groups. Palliative care is a total care for patients, regardless the type and status of the illness, and aims to improve quality of life by controlling symptoms and alleviating physical social, psychological and spiritual suffering. The varying level of physical, emotional and psychological maturity makes palliative and supportive care needs of adolescents distinct and challenging.  In this systematic review, the aim was to describe the experiences of palliative and supportive care for adolescents with life threatening illness, from the perspectives of adolescents, family and nurses as providers of palliative and supportive care.  A systematic review of descriptive meta-synthesis was the appropriate method of choice concerning the aims focus on subjective experiences of palliative and supportive care for adolescents. PubMed and CINAHL were the two databases used for data sources of qualitative published articles between the years of 2006-2016.  A total of 1066 qualitative published articles were identified, but only 16 articles have met the inclusion criteria. Nine articles were focusing on adolescents’ experiences, whereas five articles were focusing on families’ experiences and the remaining two were on the nurses’ experiences in providing palliative and supportive care to adolescents. A total of eleven themes have emerged. Four themes were from adolescent’s perspective: preserving self or identity, social support, acceptance and feeling positive and care setting. Another four themes were on family’s perspective: social support, information and decision making, care setting and perception of self-image. Whereas the remaining three themes were on nurse’s perspective: importance of family dynamics, reaching out to adolescents, balancing professional and personal involvement.  In conclusion this systematic review meta-synthesis showed that social support, specifically peer’s support had an impact in enhancing coping with the altered body image and ordinary daily social activities of adolescents due to life threatening illnesses and their treatment. Nurses have a key professional role in facilitating the social network of social support to promote quality of life by maintaining the need for normality.

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Bakgrund: Palliativ vård syftar till att lindra symtom och öka livskvalitén i livets slutskede hos den som har en livshotande sjukdom. Att stödja närstående är en viktig del inom palliativ vård. Närstående definieras som en person med nära relation till den enskilde. Individer upptill 18 år definieras som barn och har lagstadgade rättigheter, bland annat inom vården. Barn som är närstående till en förälder med livshotande sjukdom är sårbara och påverkas både fysiskt och psykiskt. Forskning visar att sjuksköterskor saknar tillräckliga kunskaper för att bemöta och stödja barn som närstående. Syfte: Att utforska barns erfarenheter av att leva med en förälder som har en livshotande sjukdom. Metod: En litteraturöversikt med induktiv ansats bestående av 13 vetenskapliga kvalitativa och kvantitativa artiklar som publicerades mellan år 2004–2023. Resultat: I resultatet framkom fyra stycken teman. Information om sjukdom och vård, Barns känslomässiga reaktioner relaterat till förälderns livshotande sjukdom, Barns upplevelser av hemsituationen” och Barns behov av stöd och strategier för att hantera vardagen. Barnen önskade kontinuerlig information om förälderns sjukdomsförlopp från vårdpersonalen och föräldrarna. Barnen påverkades psykiskt och fysiskt vid brist på information. Förälderns sjukdom fick barnen att uppskatta tiden tillsammans med familjen och ledde till ökad mognad och nya perspektiv på livet. Slutsats: Barn som närstående till föräldrar som har en livshotande sjukdom önskar vara mer delaktiga för att hantera situationen lättare. Sjuksköterskorna önskade utökade insatser såsom utbildning för att främja kommunikationen mellan familjemedlemmarna. Att involvera barnen och delge information om sjukdomsförloppet skapar goda förutsättningar och anses vara till nytta för barnets mående på lång sikt. / Background: Palliative care aims to relieve symptoms and increase the quality of life in the final stages of life for those who have a life-threatening illness. Supporting relatives is an important part of palliative care. A relative is defined as a person with a close relationship to the individual. Individuals up to the age of 18 are defined as children and have statutory rights, including in healthcare. Children who are close to a parent with a life-threatening illness are vulnerable and are affected both physically and psychologically. Research shows that nurses lack sufficient knowledge to respond to and support children as relatives. Aim: To explore children's experiences of living with a parent who has a life-threatening illness. Method: A literature review with an inductive approach consisting of 13 scientific qualitative and quantitative articles that were published between the years 2004–2023. Results: The results revealed four themes. Information about illness and care, Children's emotional reactions related to the parent's life-threatening illness, Children's experiences of the home situation" and Children's need for support and strategies to manage everyday life. The children wanted continuous information about the course of the parent's illness from the care staff and the parents. The children were affected psychologically and physically when there was a lack of information. The parent's illness made the children appreciate the time together with the family and led to increased maturity and new perspectives on life. Conclusion: Children who are relatives to parents who have a life-threatening illness wish to be more involved in order to handle the situation more easily. Nurses wanted increased stakes such as education to promote communication between family members. Involving the children and sharing information about the course of the illness creates good conditions and is considered beneficial for the child's well-being in the long term.

Bakgrund: Palliativ vård syftar till att lindra symtom och öka livskvalitén i livets slutskede hos den som har en livshotande sjukdom. Att stödja närstående är en viktig del inom palliativ vård. Närstående definieras som en person med nära relation till den enskilde. Individer upptill 18 år definieras som barn och har lagstadgade rättigheter, bland annat inom vården. Barn som är närstående till en förälder med livshotande sjukdom är sårbara och påverkas både fysiskt och psykiskt. Forskning visar att sjuksköterskor saknar tillräckliga kunskaper för att bemöta och stödja barn som närstående. Syfte: Att utforska barns erfarenheter av att leva med en förälder som har en livshotande sjukdom. Metod: En litteraturöversikt med induktiv ansats bestående av 13 vetenskapliga kvalitativa och kvantitativa artiklar som publicerades mellan år 2004–2023. Resultat: I resultatet framkom fyra stycken teman. Information om sjukdom och vård, Barns känslomässiga reaktioner relaterat till förälderns livshotande sjukdom, Barns upplevelser av hemsituationen” och Barns behov av stöd och strategier för att hantera vardagen. Barnen önskade kontinuerlig information om förälderns sjukdomsförlopp från vårdpersonalen och föräldrarna. Barnen påverkades psykiskt och fysiskt vid brist på information. Förälderns sjukdom fick barnen att uppskatta tiden tillsammans med familjen och ledde till ökad mognad och nya perspektiv på livet. Slutsats: Barn som närstående till föräldrar som har en livshotande sjukdom önskar vara mer delaktiga för att hantera situationen lättare. Sjuksköterskorna önskade utökade insatser såsom utbildning för att främja kommunikationen mellan familjemedlemmarna. Att involvera barnen och delge information om sjukdomsförloppet skapar goda förutsättningar och anses vara till nytta för barnets mående på lång sikt / Background: Palliative care aims to relieve symptoms and increase the quality of life in the final stages of life for those who have a life-threatening illness. Supporting relatives is an important part of palliative care. A relative is defined as a person with a close relationship to the individual. Individuals up to the age of 18 are defined as children and have statutory rights, including in healthcare. Children who are close to a parent with a life-threatening illness are vulnerable and are affected both physically and psychologically. Research shows that nurses lack sufficient knowledge to respond to and support children as relatives. Aim: To explore children's experiences of living with a parent who has a life-threatening illness. Method: A literature review with an inductive approach consisting of 13 scientific qualitative and quantitative articles that were published between the years 2004–2023. Results: The results revealed four themes. Information about illness and care, Children's emotional reactions related to the parent's life-threatening illness, Children's experiences of the home situation" and Children's need for support and strategies to manage everyday life. The children wanted continuous information about the course of the parent's illness from the care staff and the parents. The children were affected psychologically and physically when there was a lack of information. The parent's illness made the children appreciate the time together with the family and led to increased maturity and new perspectives on life. Conclusion: Children who are relatives to parents who have a life-threatening illness wish to be more involved in order to handle the situation more easily. Nurses wanted increased stakes such as education to promote communication between family members. Involving the children and sharing information about the course of the illness creates good conditions and is considered beneficial for the child's well-being in the long term

In children, life-threatening illnesses (LTIs) present with both physical and psychosocial side effects, which seem to contribute to the perpetuation of hopelessness and fear among the children and their families. Children with LTIs often experience regular and painful treatment routines. A LTI not only impacts on the child but also on the family. LTIs put families in a critical and vulnerable situation, evoking emotions such as shock, disbelief and fear. Hope and coping strategies appear to be crucial for both children and their families when facing the effects of a LTI on a child. While medical intervention strategies are used to alleviate physical side effects, psychosocial intervention strategies (as referred to in this research study) that are focused on improving the well-being of the child and family, appear to be limited. Psychosocial interventions are defined as any intervention that emphasizes psychological or social factors, rather than biological factors. Psychosocial intervention strategies, such as „dream-come-true‟ projects, appear to ameliorate distress, offer respite, decrease isolation, empower individuals, increase self-confidence and give the children unique opportunities to connect with their families in a positive, normal way. Such a psychosocial intervention strategy is offered by the Reach For A Dream Foundation (RFAD) in South Africa. The experiences of the recipients of RFAD „dream-come-true‟ projects were the focus of this study. The goal of this research study was to study the „dream-come-true‟ psychosocial experiences of children/adolescents and their families, by means of a narrative enquiry design. This design allowed participants to tell their stories truthfully, giving the researcher the opportunity to immerse herself in the personal experience of each participant. Participants were purposively, and then randomly, selected from an RFAD client list. A total of six children/adolescents, between the ages of 8 and 18 years, were randomly selected from Johannesburg and the surrounding areas. The children/adolescents and both parents were interviewed, except for one father who was not present (17 participants in total). Child/adolescent interviews included the use of fun, tactile emotive cushions to assist the participants to recognize emotions they had felt „pre-dream‟, during the „dream‟, and „postdream‟. Semi-structured, individual in-depth interviews were used to interview parent participants. The parent‟s story was not interrupted, thereby providing the opportunity for a fluid narrative. In addition to interviews, the researcher made field notes of the participant‟s reactions, body language and emotions after each interview. All interviews were recorded and transcribed. Tesch‟s (1990) approach was used to identify, analyse and report patterns within the data. The findings of this study suggest that intervention strategies improve emotional health and overall wellness in participants. „Pre-dream‟ feelings of fear, sadness, loneliness and a lack of normality in everyday life, were prominent themes. Participating parents expressed anger, helplessness and guilt about being unable to help their children. During the „dream-come-true‟ experience, the predominant themes that emerged were excitement, amazement and gratitude. The theme of disbelief in the reality and experience of the „dream‟ was also prominent. „Post-dream‟, the participants reported a more positive, confident and hopeful outlook. This research appeared to yield some important information on the possible benefits of psychosocial intervention strategies, as they seemed helpful in addressing the challenges presented by LTIs in children/adolescents. / MA (Psychology), North-West University, Potchefstroom Campus, 2015

In children, life-threatening illnesses (LTIs) present with both physical and psychosocial side effects, which seem to contribute to the perpetuation of hopelessness and fear among the children and their families. Children with LTIs often experience regular and painful treatment routines. A LTI not only impacts on the child but also on the family. LTIs put families in a critical and vulnerable situation, evoking emotions such as shock, disbelief and fear. Hope and coping strategies appear to be crucial for both children and their families when facing the effects of a LTI on a child. While medical intervention strategies are used to alleviate physical side effects, psychosocial intervention strategies (as referred to in this research study) that are focused on improving the well-being of the child and family, appear to be limited. Psychosocial interventions are defined as any intervention that emphasizes psychological or social factors, rather than biological factors. Psychosocial intervention strategies, such as „dream-come-true‟ projects, appear to ameliorate distress, offer respite, decrease isolation, empower individuals, increase self-confidence and give the children unique opportunities to connect with their families in a positive, normal way. Such a psychosocial intervention strategy is offered by the Reach For A Dream Foundation (RFAD) in South Africa. The experiences of the recipients of RFAD „dream-come-true‟ projects were the focus of this study. The goal of this research study was to study the „dream-come-true‟ psychosocial experiences of children/adolescents and their families, by means of a narrative enquiry design. This design allowed participants to tell their stories truthfully, giving the researcher the opportunity to immerse herself in the personal experience of each participant. Participants were purposively, and then randomly, selected from an RFAD client list. A total of six children/adolescents, between the ages of 8 and 18 years, were randomly selected from Johannesburg and the surrounding areas. The children/adolescents and both parents were interviewed, except for one father who was not present (17 participants in total). Child/adolescent interviews included the use of fun, tactile emotive cushions to assist the participants to recognize emotions they had felt „pre-dream‟, during the „dream‟, and „postdream‟. Semi-structured, individual in-depth interviews were used to interview parent participants. The parent‟s story was not interrupted, thereby providing the opportunity for a fluid narrative. In addition to interviews, the researcher made field notes of the participant‟s reactions, body language and emotions after each interview. All interviews were recorded and transcribed. Tesch‟s (1990) approach was used to identify, analyse and report patterns within the data. The findings of this study suggest that intervention strategies improve emotional health and overall wellness in participants. „Pre-dream‟ feelings of fear, sadness, loneliness and a lack of normality in everyday life, were prominent themes. Participating parents expressed anger, helplessness and guilt about being unable to help their children. During the „dream-come-true‟ experience, the predominant themes that emerged were excitement, amazement and gratitude. The theme of disbelief in the reality and experience of the „dream‟ was also prominent. „Post-dream‟, the participants reported a more positive, confident and hopeful outlook. This research appeared to yield some important information on the possible benefits of psychosocial intervention strategies, as they seemed helpful in addressing the challenges presented by LTIs in children/adolescents. / MA (Psychology), North-West University, Potchefstroom Campus, 2015

Utilizing a collective case study design, I examined and described the filial therapy (FT) process and adaptations discovered to be necessary and unnecessary in working with families who have a child with a life-threatening illness in the hospital setting. Data from a total of 7 parents was utilized, including those who terminated early, in order to gain a greater understanding of adapting FT for families who have a child with a life-threatening illness and their participation patterns. The parents attended 10 one- to two-hour FT sessions. The data was analyzed to examine for themes, patterns and relationships intrinsically with each case participant, as well as across cases. Analysis indicated that parents with a child with a life-threatening illness had great difficulty committing to attend FT; and a high rate of attrition occurred for those who did commit. A theme regarding flexibility was found to be of eminent importance in a variety of manifestations including therapeutic methods, session format, location and time of sessions, and intense vs traditional FT. Therapeutic adaptations in flexibility found to be important including openness to cathartic and personal parenting sessions, tolerance of forgetfulness, and lowering typical therapeutic concerns of dependency in the relationship. An inability for parents in this situation to benefit from intense FT methods was also noted. Changes noted in the child of focus included increased confidence, increased cooperation in the medical setting, increased communication with the parent and with medical staff regarding medical issues, and increased communication with the parent regarding personal feelings and issues. Changes noted in the parents included increased confidence in parenting skills, increased awareness of the child's perceptions of the environment, increased tolerance in allowing the child to struggle in and out of the medical setting, with both emotional and physical pain in order to gain coping skills, increased ability to allow the child to empower self, and increased abilities in limit setting.

The purpose of this study was to increase awareness and understanding of parental caregivers’ current support needs in order to provide direction in the development of a theory-based hope intervention. The intervention is intended to improve psychosocial and bereavement support for parental caregivers of children with life limiting (LLI) or life threatening illnesses (LTI). The number of parents who have children living with a LLI/LTI is increasing. The impact of these illnesses on parents is significant as they travel alongside their child and experience emotional, physical, and spiritual upheaval. Current empirical research reveals that this journey challenges parents’ understanding of life, faith, and certainty in the future. Many studies demonstrated that parents’ needs are not consistently met and parents often reported the need for psychosocial support. Hope has been found to be an important psychosocial concept for parents and has been shown to provide support when facing difficult circumstances. For this reason, the concept of hope provided the conceptual framework for this research. In order to develop a theory-based psychosocial hope intervention for parental caregivers, a large scale privately funded project that included a metasynthesis of current research, a Delphi survey, and focus groups was conducted. All three components of this project were developed by a research team of two doctorate nurse researchers, one pediatric palliative care specialist, one pediatric oncologist, one community member, and a graduate student. The study presented here is based on the Delphi survey only and serves as the graduate student’s master of nursing thesis. A Delphi survey consisting of three rounds of questions and controlled feedback to experts was employed. Sixty-eight experts were recruited including parental caregivers who have children diagnosed with LLIs or LTIs and those who care for them such as community members, nurses, social workers, and physicians. Based on Bally et al.’s (2013) grounded theory of Keeping Hope Possible, the survey focused on four subprocesses that were identified as essential for parental hope. Experts suggested strategies or activities for each subprocess. Answers were summarized and ranked in order of highest to lowest according to feasibility and effectiveness. The final round revealed a consensus and eight major themes emerged: organize basic needs; connect with others; prioritize self-care; obtain meaningful information; take things day by day; advocate for parental participation; manifest positivity; and celebrate milestones. The survey took place via email to allow easy access to experts and parents globally. This study identified needs of parents of children with LLIs or LTIs in order to develop a theory-based psychosocial hope intervention. Results have the potential to provide direction for a newly developing pediatric palliative care program in Western Canada.

The overarching aim of this thesis was to describe how family members experienced everyday life with life-threatening illness close to death, with focus on self-image and identity. The thesis comprises four papers, each with a specific aim to illuminate various aspects of the phenomenon under study. The study population consisted of 29 participants; ten family caregivers and five families, including five patients with life threatening illness and their family members. Data were based on retrospective single interviews (paper I), prospective individual, couple and group interviews with the families over six to eighteen month (papers II-III). Interpretive description approach (papers I, II, IV), narrative method (paper III) and secondary analysis (paper IV) were used to analyze data. The findings show how living close to death influences everyday life at home, at several levels (papers I-IV). From the perspective of the dying person, narrations of daily situations was described by four themes related to identity and everyday life; inside and outside of me, searching for togetherness, my place in space and my death and my time. The changing body, pain, fatigue, decreased physical capacity and changed appearance, appeared to influence the dying person’s need for altered knowledge and community, and as a result the patterns of interaction within the families changed. The strive for knowledge and community took place at home, an arena for identity work and the conscious search for meaning, knowledge and community; it was limited by time and inevitable death (paper III). For the family member, life close to death can mean sharing life with a changing person in a changing relationship (paper II). It may mean that everyday life needs to be modified in order for it to work (papers I-IV). New patterns of dependence and an asymmetrical relationship affect all involved (papers III-IV). Daily life close to death is about finding the space to promote the individual self-image, me-ness, at the same time as finding new ways of being a family; we-ness (paper II). Regardless of being the ill person or not, the family members we interviewed had to face impending death, which challenged earlier ways of living together (papers I-IV). From the perspective of the relatives, the everyday life of caring for the dying family member was characterized by challenged ideals, stretched limits and interdependency (paper I). Situations that challenged the caregivers’ self-image were connected to intimacy, decreasing personal space and experiences such as “forbidden thoughts”. The findings suggest that the bodily changes were of importance for the self-image, and that the former approach to the own body was important in the process of experiencing the body. The person living close to death was in transition to something new; being dead in the near future. One way of handling the struggles of everyday life was to seek togetherness, strive to find other persons with similar experiences while sharing thoughts and feelings. Togetherness was sought within the family, in the health care system and on the internet; a sense of togetherness was also sought with those who had already died. The other family members were also in transition as the future meant living on without the ill family member and changing their status to for example being a widow or being motherless. Identity work close to death denotes creating an access ramp into something new; a transition into the unknown. From a clinical perspective, this study emphasizes the significance of creating a climate that allows caregivers to express thoughts and feelings.

No description available.