Living a normal life in an extraordinary way: A systematic review investigating experiences of families of young people's transition into adulthood when affected by a genetic and chronic childhood condition

IntroductionThe transition into adulthood is a developmental stage within the life cycle. A chronic childhood condition can disrupt this transition and create major challenges for both the young person and his or her family. Little is known about families’ experiences when living with a rare genetic disease. Therefore, the purpose of this literature review was to understand experiences of families living with a chronic childhood disease during transition into adulthood by integrating evidence.MethodA systematic review using an integrative approach to data inclusion and analysis comprising qualitative, quantitative and other methodological studies about a range of genetic and chronic childhood diseases was undertaken to identify relevant information. Databases searched were PubMed, Cochrane Library, PsychINFO, CINAHL, and AMED, using the search terms (1) family, caregivers, young adult, adolescent; (2) adolescent development, transitional programs, transition to adult care; (3) muscular dystrophy, spinal muscular atrophy, cystic fibrosis, haemophilia and sickle cell disease. Study findings were critically appraised and analyzed using critical interpretive synthesis.ResultsA total of 8116 citations were retrieved. 33 studies remained following the removal of duplicates, papers unrelated to genetic childhood conditions and families’ experiences of the transition into adulthood. Findings provided three perspectives: (1) the young person's perspective on how to “live a normal life in an extraordinary way” and “manage a chronic and life threatening disease”; (2) the parent perspective on the “complexity of being a parent of a chronically ill child” and “concerns about the child's future” and (3) the sibling perspective on “concerns about the siblings future”.As a consequence of the genetic childhood condition, during the ill family members’ transition into adulthood all family members were at risk for psychosocial difficulties as they mutually influenced each other. Previous research focused predominately on the individual illness experience, and less emphasis was put on the family perspective.ConclusionsYoung people and their family members experienced multiple challenges and not only for the ill individual but also there were consequences and health risks for the whole family system. Therefore, a family systems perspective to research and care is indicated to assist affected families to cope with their complex life and health situation.     

Forever Different: Experiences of Living with a Sibling Who Has a Traumatic Brain Injury

This qualitative exploratory study examined the experiences of people living with a brother or sister who has suffered a traumatic brain injury. Eight siblings between the ages of 14 and 30 were interviewed using McCracken's long interview method. Data analysis indicated the presence of one overarching theme—namely, that the well sibling's life was forever different. There were four supporting themes: change in sibling (the reason for the difference in the well sibling's life), mixed emotions (the well sibling's reactions to the experience), different life rhythm (changes in the way the well sibling went about day‐to‐day life), and change in self (ways the well sibling became a different person). This article analyzes the study's result in light of previous research and family systems theory, and it discusses the implications for the care given to well siblings by professionals in the field of rehabilitation.     

In Support of Sibling Inclusion: A Literature Review

The responses of siblings to a childhood mental illness have been conceptualized in different ways. When siblings have not been ignored, they have been viewed most frequently as an influence upon the illness or as subject to the same dynamics that were believed to have caused the mental illness. As conceptualizations of the causes of mental illness have changed, the literature on siblings has changed to focus on the impact of the illness on the sibling. How siblings and sibling relationships are conceptualized has important implications for clinical research and practice. More research is needed to understand the sibling experience in childhood mental illness. Clinicians can do more for the family if all of the family dynamics and responses to the illness are explored.     

Behavior changes exhibited by siblings of pediatric oncology patients: A comparison between maternal and sibling descriptions

The purpose of this study was to identify the coping strategies used by the well siblings of pediatric oncology patients as identified by both the mother and the well siblings. The findings of this research study showed that both mothers and the well sibling were able to identify behavioral changes (95.2% of the mothers and 85.7% of the well siblings identified behavior changes). Behavior changes identified by both the siblings and mothers included being more sensitive to the needs of others, being more thoughtful, playing with friends, fighting, trouble sleeping, and complaints of headaches. Nurses can conduct thorough assessments of sibling behavior changes when a child family member has been diagnosed with cancer. From these assessments, nurses can provide care to assist the entire family during the ill child's treatment.     

The lived experience of childhood cancer: one sibling's perspective.

The demands of cancer on children and their parents have been studied and understood for many years now. However, very little focus has been placed on one other very important part of the family system--the siblings. In the health care profession today, there is a growing awareness that the psychosocial needs of siblings of children with cancer are less adequately met than those of other family members. Research suggests that siblings are particularly vulnerable to adjustment difficulties (depression, anger, anxiety, feelings of guilt, and social isolation), and they experience similar stress to that of the ill child Siblings have been identified as the most emotionally neglected and unhappy of all family members during serious childhood illnesses. The purpose of this study was to gain a better understanding of the lived experience of one 14-year-old sibling's experience with childhood cancer. Through the qualitative research process of phenomenology, the researcher gained a greater understanding of the participant's experience and how the childhood cancer experiences affected her and her family. Themes that emerged through the process of content analysis included emotional intensity, increased empathy for others, personal growth, need for support, and desire to help others.     

Exploring the later life relationship between adults with cerebral palsy and their non-disabled siblings

Abstract

Purpose: Adults with moderate or severe cerebral palsy often require significant lifetime support from family and formal services. The aim of this study was to use a life course approach to explore how previous life experiences impact on the later life relationships of people with moderate to severe cerebral palsy aged 40 years and over and their non-disabled siblings. Method: Twelve adults with moderate to severe cerebral palsy and 16 of their non-disabled siblings were interviewed twice to explore their relationships. Constructivist grounded theory method was used to analyse the data. Results: Four themes were identified as important in understanding these later life sibling relationships: sharing childhood experiences, contact in adulthood, diminishing parental role and increasing support needs. Conclusions: The life course approach indicated that siblings’ growing up together was important for the development and maintenance of emotional closeness later in life. Emotional closeness and familial obligation were important factors in motivating siblings with and without cerebral palsy to maintain or re-establish contact with each other in adulthood. Maintenance of sibling relationships in later life is dependent on health, proximity and the ability to keep in contact with each other.

• Implications for Rehabilitation

• As adults with severe cerebral palsy live longer, their relationships with non-disabled siblings often take on increased importance and particularly as their parents may be no longer able to provide support.

• Service providers have a role in helping ageing siblings with and without disability to maintain and build their relationships, for example, by supporting geographically distant siblings to keep in touch.

• Service providers have a role in supporting the person with a disability and their siblings to make plans for the future.

     

Bamboo Sibs: Experiences of Taiwanese Non-disabled Siblings of Adults with Intellectual and Developmental Disabilities across Caregiver Lifestages

Non-disabled siblings of individuals with intellectual and developmental disabilities (IDD) usually experience trajectories to gradually intensify their involvement in caregiving. However, non-disabled siblings in Asian countries have been woefully overlooked in research despite the fact that Asian countries hold over half of the world’s population and have a set of family values different from Western countries. This exploratory study examined experiences and perspectives of Taiwanese non-disabled siblings of individuals with IDD across lifestages. The researcher used a phenomenological approach to examine in-depth interviews with 30 Taiwanese non-disabled siblings of adults with IDD. Common themes emerged under three lifestages (i.e., minimal caregiver role, anticipating caregiver role, and joint/primary caregiver role), indicating that filial piety remained the core value for Taiwanese families. Taiwanese non-disabled siblings described a love-hate relationship with the adults with IDD. They reported feeling anxious about the lack of discussion with their parents. Finally, they talked about taking care of the adults with IDD as fulfilling filial obligations to their parents. In addition to the sibling subsystem, future researchers and practitioners should take the parental subsystem into account to understand and support non-disabled siblings.

     

“Nothing is carved in stone!”: uncertainty in children with cancer and their families

Although more children are surviving childhood cancer, they and their families still face many new stressors and challenges. Understanding the experiences of childhood cancer in children and families is conditional upon building a sound and comprehensive knowledge base that is grounded in research. Accordingly, a longitudinal interpretive qualitative study was conducted to arrive at an understanding of children's and families' perspectives on having to experience the childhood cancer-symptom trajectory. A purposive sample of 39 children with cancer and their families were recruited into the study. Open-ended interviews and participant observation were the primary data collection methods. Data were analyzed by the constant comparative method of grounded theory and analysis of illness narratives. Findings revealed that in addition to the stress and suffering resulting from the children's multiple symptom experiences, children and their families experienced many other events or 'rough spots' that made cancer and life difficult to get through. Although the 'rough spots' were numerous and varied, they all resulted in children and their families experiencing feelings of uncertainty. This paper focuses on describing the nature of uncertainty experienced by the children with cancer and their families. Recommendations for nursing practice and research are discussed.     

The diversity of family health: constituent systems and resources

The purpose of this study was to explore changes in family health associated with child's chronic illness and hospitalization. The aim was to answer the following questions: (i) What kind of changes do families experience when a child in the family is afflicted by a chronic illness; and (ii) What kind of changes do families experience when their child is admitted to hospital? The data were collected in 2002 in interviews with 29 such families whose children were receiving treatment or who had previously received treatment on the paediatric wards of two hospitals in Finland. Data were collected until reaching theoretical saturation, in which no additional data are found. Data analysis was based on the grounded theory method, proceeding to the stage of axial coding. Family health was formed out of two different dimensions: the constituent systems and the resources of family health. The constituent systems describe the impact of the child's chronic illness and period of hospitalization at the level of both individual family members and the family as a whole. These systems were described by five categories: (i) ill child at the centre of family attention, (ii) siblings in a minor role, (iii) the child's illness governs parental well‐being, (iv) the roller coaster of the couple relationship and (v) the whole family is ill. The resources promoting and maintaining family health were divided into six different categories: (i) creative and maintaining mental images, (ii) active involvement, (iii) internal coping means, (iv) reinforcement of coping means, (v) awareness and change of values and (vi) social network shares emotional burden and responsibility for care. The results of the study show that family health is highly vulnerable when a child has to be admitted to hospital because of a chronic condition. They should help nursing staff gain a clearer picture of the depth and diversity of family health and support the resources that promote family health. Future research should study the methods of family nursing used in the care of families with children with chronic conditions.     

Enhancing sibling presence in pediatric ICU

Critical illness of a child affects all members of the family, including well brothers and sisters. Stress in their lives results from changes in parental behaviors, caregiving arrangements, and family relationships. These changes, along with limited understanding and information about the crisis, create feelings of confusion, loneliness, jealousy, and sadness, as well as physical symptoms and behavior changes. Educating pediatric ICU nurses about the needs and reactions of well siblings enables them to optimize support to siblings and educate parents. A sibling policy guarantees that choice and support are offered in a consistent and thorough manner to each critically ill child's family; this helps to ensure that the family unit has the abilities to nurture the ill child and other well children.     

A phenomenological study of siblings bereaved by suicide: A shared experience

This interpretative phenomenological analysis explored the key issues in the grief experiences of seven young adults bereaved by the youth suicide of a sibling. We conducted semi-structured phone interviews from which we derived four themes describing the participants’ experiences of: (a) the process of grief, (b) grief interactions (within families and outside), (c) continuing bonds, and (d) meaning-making and growth through grief. The stories highlight the impact of family relationships on the grieving process in siblings and the need for support to help family members better communicate, understand, and respect each other’s needs as they process their grief.     

Stigma in childhood chronic illness: a well sibling perspective

The purpose of this study was to describe how well siblings view potential stigma in childhood chronic illness. Results of interview of 27 siblings are discussed using three major categories: revealing of the chronic illness to others, responses to the ill child, and impact of the illness on daily living.     

How patients' experiences contribute to decision making: illustrations from DIPEx (personal experiences of health and illness)

Aim To describe how people use their and other people’s experiences (‘experiential evidence’) in making health care decisions. Background People faced with health decisions may employ not only clinical evidence and advice, but also their own previous experiences and the experiences of others who have faced similar decisions. Professionals have taken little notice of people’s use of such experiential evidence and its importance in practice; acknowledging it would improve communication with patients. Methods The data come from the DIPEx (personal experiences of health and illness) project, which involves rigorous analysis of narrative interviews of people with particular conditions, chosen to represent the widest practicable range of experiences of each condition. Each collection consists of 40–50 interviews. Results The analyses of people’s experiences are summarized for patients and professionals on a website ( http://www.dipex.org ) and illustrated by clips (video, audio or written) from the interviews. We draw on the qualitative research conducted for DIPEx to consider some of the different ways that people integrate experiential information when they face decisions about antenatal screening, childhood immunization and treatment for cancer. Conclusions Other patients’ experiences are an important part of the evidence that people use when making decisions about health care. People are naturally drawn to other people’s stories, which add salience to medical information and make facts palatable and memorable. Patients’ experiences are not an alternative to the evidence base – they are part of it; to dismiss them as ‘anecdotes’ is a serious misunderstanding. There are established methods, grounded in social science traditions, which can be used to research and report patients’ experiences. Health professionals, as well as patients, need to consider and value this experiential evidence. Implications for Nursing Management Managers and clinicians can help patients by guiding them to information resources, such as DIPEx, that present evidence‐based health information through patients’ experiences.     

Transcending chronic liver disease: a qualitative study

• ? This study explores and describes experiences of chronic liver disease from the patient's perspective. No qualitative research studies appear to have examined the experiences of these patients. In–depth focused interviews and grounded theory data collection and data analysis methods were used. A two-stage theoretical framework (becoming ill, and not living) of the experience of transcending chronic liver disease is presented.
• ? Sociological and psychological literature on common sense models of health and illness are briefly reviewed. Several suggestions for further research are made. The way in which this qualitative research study is leading to a quantitative and qualitative appraisal of the psychological adjustment in end-stage chronic liver disease patients is outlined.

     

Family members' experiences of everyday life when a child is dependent on a ventilator: a metasynthesis study

Children using mechanical ventilation for survival represent a small, but growing, vulnerable population in society. The aim of this study was to describe the existing qualitative research that examined family members' experiences when a child is dependent on ventilator at home. A metasynthesis is an interpretative integration of qualitative research findings based on a systematic literature search. Twelve original research reports focusing on the life situation of ventilator- and technology-dependent children and their families published between 1998 and 2006 were selected as data. Themes from the metasynthesis included experiences of the ill child, siblings, and parents and the meaning of space and place. These findings provide an understanding of the family members' experiences when a child is dependent on a ventilator for survival. Recommendations for future research with this population of families include a greater focus on professional support systems and family strengths and the use of longitudinal research methods using observation and interviews.