Behoeftes van gesinne waar ’n kind met kanker gediagnoseer is : persepsies van maatskaplike werkers
CITATION: Slabbert, I. & Steenkamp, T. 2018. Behoeftes van gesinne waar ’n kind met kanker gediagnoseer is : persepsies van maatskaplike werkers. Tydskrif vir Geesteswetenskappe, 58(3):567-584, doi:10.17159/2224-7912/2018/v58n3a8.
The original publication is available at http://www.scielo.org.za
As ŉ kind met kanker gediagnoseer word, is dit nooit maklik om te verwerk nie. Die hele gesinsisteem ervaar ontwrigting om by sodanige diagnose aan te pas, en almal ervaar sekere behoeftes in hierdie situasie. Vir hierdie studie is die sisteemteorie gekies as teoretiese raamwerk om die verskillende behoeftes van die subsisteme in die gesin te eksploreer en te verken. Die doel van die studie was om die persepsies van maatskaplike werkers te ondersoek oor die behoeftes van gesinne waar ŉ kind met kanker gediagnoseer is. ŉ Kwalitatiewe studie is onderneem en etiese klaring is daarvoor verkry. Agtien deelnemers van ses verskillende hospitale en hospiese landwyd het aan die studie deelgeneem. Doelbewuste steekproefneming is gedoen. Data is ingesamel aan die hand van ŉ semi-gestruktureerde onderhoudskedule. Drie temas is geïdentifiseer, naamlik die behoefte aan inligting, ondersteuning en kommunikasie. Relevante subtemas is ook geïdentifiseer. Die gevolgtrekking kan gemaak word dat die gesinsisteem waar ŉ kind met kanker gediagnoseer is, sekere behoeftes ervaar waarvan maatskaplike werkers bewus moet wees ten einde effektiewe dienslewering aan hierdie gesinne te bied.
It is always difficult to come to terms with the diagnosis of cancer, especially where it concerns a child. The shock of such a situation usually encapsulates several emotions, such as fear, guilt, denial, anger and sadness. No official statistics exist, but it is estimated that 1 500 children in South Africa are annually diagnosed with the illness. In such a case, the entire family is affected, and may experience specific needs after the diagnosis, as well as during the course of the illness. For this study, the systems theory was chosen as a theoretical framework, as the family system and its different sub-systems are affected by the course of events. Several studies have indicated that the family system discloses several needs in the wake of the diagnosis. Social workers could play a vital role in addressing some of these needs. Families have to deal with the shock of the diagnosis and often experience feelings similar to the stages of grief. Treatment of the cancer also has a major impact on the family system. Stressors such as hospitalisation of the sick child, caring for other siblings and the long-term effects of the cancer are stressors that the family has to deal with. In short, the psychological stress after the diagnosis of childhood cancer negatively affects the functioning of the family system. Some parents might display symptoms of PTSD as a result of the precariousness of their situation. The family system has to learn to adjust to a new life where the child with cancer is the top priority. Social workers who form part of the multi-disciplinary team can assist these families through their journey of dealing with childhood cancer. They can also provide support for different members of the family according to their specific needs. Social workers in an oncology setup usually communicate to the family system information regarding the nature and scope of the cancer. They also provide doctors and other members of the multidisciplinary team with information regarding psychosocial circumstances of the family system. From a social work perspective, the need for greater insight into the needs of the family system where a child has been diagnosed with cancer is important for effective servicerendering. The aim of this study was to explore the perceptions of social workers on the needs of families after cancer diagnosis of a child. A qualitative study with an explorative and descriptive nature was proposed. Six hospitals and hospices were approached and through purposive sampling, 18 participants were selected out of a population of social workers who render services to affected families. The criteria for inclusion were: • Participants had to be registered social workers, rendering services to families where a child had been diagnosed with cancer. • They had to work either in a hospital or a hospice. • They had to be fluent in English or Afrikaans. Data were collected by means of interviews, utilising a semi-structured interview guide. Ethical clearance was obtained for the study. The data were analysed and categorised into three themes and relevant sub-themes, according to the needs of the family system following a child’s diagnosis of cancer. Theme 1 involves the need for information as indicated by the participants. The parent sub-system needs information on the prognosis and nature of the cancer, which would enable them to make informed decisions. The sick child also has a right to know what is happening to him/her and what to expect during treatment. In addition, the sibling sub-system needs information on the condition of the sick brother or sister. Some participants indicated how difficult it was for parents to give information regarding the cancer diagnosis to their children. Theme 2 emphasises the need for support, indicated as an important priority in the family’s life. Participants observed that a lack of resources impacted negatively on the family subsystem. Aspects such as financial assistance and transport were also mentioned under practical support, as well as the role of grandparents to assist the family with practical arrangements. As the family system experiences a range of emotions that could be likened to the stages of grief, emotional support for the family is paramount. Participants remarked that emotional support given by significant others assure the family of care and consideration. Some participants also mentioned the importance of maintaining a balance between emotional support and the family system’s privacy where family boundaries should be clearly defined. Professional support was indicated by participants as a need where the different members of the medical team could contribute. The significant role of the social worker was also mentioned. The third theme entails communication. The need was expressed by participants for open and clear communication between the different sub-systems in the family so that the whole family system could form part of the process in dealing with the cancer. It was also indicated that some parents find it difficult to speak to their children, as they experienced feelings of being overwhelmed. Honest communication between the healthcare team and the family was also emphasised, so that everyone would know what to expect and how to plan for the way forward. It can be concluded that social workers who render services to families affected by cancer should be aware of the different needs that might arise. It is recommended that social workers take all the unique needs of the family system into consideration during intervention after the diagnosis. The desire for sufficient information regarding the cancer diagnosis and prognosis, the need for practical, emotional and professional support, as well as open communication within the family system and between the family and the healthcare team were all identified as important needs.