Paediatric acute lymphoblastic leukaemia (ALL) has provided a landmark in cancer therapy as the first disseminated and otherwise lethal malignancy to be curable in the majority of patients. Although the success rate is high, this benefit is achieved through a long, invasive and very arduous treatment process. The experience of undergoing such intensive treatments affects not only the child, but the entire family. To date, however, psychosocial research is only beginning to describe the depth and breadth of the impact on families of this experience. This paper presents findings from a recent qualitative study of families coping with the initial stage (induction remission) of treatment for childhood ALL. The findings indicate that the experience is so profoundly disturbing and disruptive that it challenges the families' sense of normalcy and stability. These findings provide evidence of significant hardship and stress, with the consequent indication of the need for social work support. Above all, such families need to hear the comforting message from social workers that what they are experiencing is normal under the circumstances. Along with practical assistance, they need reassurance about the intensity of feelings they will experience and an affirmation of the difficulty of the challenges they face.
The article presents comparative research findings on the notion of "spiritual pain." The findings from interviews with hospice patients affirm the previously published, preliminary conceptualization of spiritual pain from interviews with survivors. However, while the survivor findings highlight the potential for spiritual pain associated with life after high-tech curative treatment, the hospice patient data emphasize the protectiveness of the hospice experience for deflecting the possibility of spiritual pain. It is anticipated the discussion of comparative findings will affirm the importance of researching this "ignored dimension" and, in so doing, will enrich our understanding of the spiritual dimension of healthcare. The work is part of a program presently developing a language of spirituality through research.
One of the assumptions that underpins the literature on spirituality is the belief that facing a terminal illness is a life crisis that intensifies the search for meaning, leaving individuals predisposed to embrace religion. To date, however, there is scant empirical research on the topic. This article seeks to make a contribution to this topic by reporting findings from a qualitative study that address the question of whether individuals embrace religious beliefs when faced with the challenge of a serious illness. The data were gathered from open-ended interviews with 14 hospice patients, audiotaped, transcribed verbatim, and thematically analyzed. The findings indicate the majority did not seek religious comfort or conversion as a response to the challenge of terminal illness, even when this was seen as desirable. Although participants were not actively inspired to be religious as a result of their illness, they did hold a number of spiritual perspectives that were actively at play.
There is scant research available about how fathers cope with their children receiving difficult treatment protocols for diseases such as childhood acute lymphoblastic leukemia (ALL). The present discussion contributes to this area with findings on the paternal experience of treatment for pediatric ALL collected from the families in a longitudinal study conducted at Royal Children's Hospital and the Mater Children's Hospital, Brisbane, Queensland. These findings emphasize the emotional shock and pain fathers experience in the early stages of the treatment process for children with leukemia. Their emotional responses run the gamut from engagement in the treatment process to withdrawal, from crying to taking "time out" to experiencing and expressing anger at their (and their child's) fate. In dealing with their child's illness over time fathers struggle with accepting the situation and attempting to restore some semblance of normality to their own and their families' lives.
The findings presented in this discussion seek to make a contribution to fostering an appreciation of the importance of research on spirituality, a previously neglected dimension of health care. Qualitative research methodology based on open-ended interviews with 12 survivors of haematological malignancies was used. The interviews were transcribed verbatim and thematically analysed using the NUD*IST computer package. The preliminary findings from the study indicate a need for the development of a new language for articulating spirituality. The present discussion is an introductory attempt to begin to explore the notion of, and language for, the idea of 'spiritual pain'. The findings indicate that individuals need a strong sense of meaning-making and connection with life to be able to deal with the demands of aggressive, invasive treatments. Such a connection can be threatened by a break with the normal or expected relationships and satisfaction with life through physical, identity, relational and existential challenges and losses. When the disconnection is acutely painful (a subjective phenomenon depending on the individual) it then is experienced as spiritual pain, creating a void that challenges the individual's ability to derive any meaning from their existence. This study is seen as preliminary work, the first step in a series of articles aimed at beginning to develop, through research, a language of spiritual care.
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