Caregiving experiences of families living with persons with schizophrenia: a systematic review

Abstract

Background Living with and caring for patient with schizophrenia is difficult, often long-term responsibilities. These caregiving experiences have been studied in a holistic and meaningful manner by using qualitative approaches. Aims, objectives This systematic review aims to determine the meaningfulness of caregiving experiences of families living with person with schizophrenia. Background Schizophrenia is one of the most severe chronic mental illnesses, characterized by a disintegration of the process of thinking and of emotional responsiveness. Families are often required to play the major role of taking responsibility for caring for these patients. Objectives The objective of this review was to synthesize the best available evidence on the meaningfulness of caregiving experiences of families living with and taking care of persons with schizophrenia. Inclusion criteria Types of participants Family members of a person, years and older, who has been diagnosed with schizophrenia for at least six months. Types of intervention, s, phenomena of interest The review considered qualitative studies that explore caregiving experiences of families of persons with schizophrenia that related to their caring for, or living with, their family member with schizophrenia. These experiences included caring tasks, feelings, attitudes or beliefs, needs coping or help-seeking behaviors and ways to solve problems. This review included studies conducted in either hospital or community settings. Types of studies The review considered any qualitative studies that drew on caregiving experiences of families of persons with schizophrenia using research methodologies including, but not limited to, phenomenology, grounded theory and ethnography. Types of outcomes The outcomes of interest included, but were not limited to, the following, . Subjective accounts related to caregiving of families of persons with schizophrenia., . Attitudes, beliefs or feelings of family members toward living with, or caring for, a person with schizophrenia., . Family members, perceptions of caring tasks, responses or actions to persons with schizophrenia., . Perceived needs of families of persons with schizophrenia., . Coping, help-seeking behaviors, and ways to solve problems of families of persons with schizophrenia. Search strategy A comprehensive search strategy was developed to find both published and unpublished studies in English and Thai languages from, -, . CINAHL, EMBASE, Cochrane Library, PubMed, Science Direct, Scopus, PsycINFO, ProQuest Dissertations and Theses, and two Thai language databases were searched. Methodological quality Papers selected for retrieval were independently assessed by two reviewers for methodological validity prior to inclusion in the review using a standardized critical appraisal instrument from the Joanna Briggs Institute. Data collection Data were extracted from papers included in the review using the standardized data extraction tool from the Joanna Briggs Institute. Data synthesis Findings were synthesized using the Joanna Briggs Institute, s approach of meta-synthesis by meta-aggregation. Results Twenty-seven papers were included in the review. There were, findings extracted from the, papers, which aggregated into, categories. The last step was to synthesis the categories that appeared to share attributes into statement recommendations for practice. Six synthesized findings were derived from, categories, Once the diagnosis has been made, and family caregivers have responded to the illness, the health care system and their ill relatives, health care providers need to be aware and sensitive to their response and provide care accordingly, Living with and taking care of a person with schizophrenia has a tremendous impact on the caregiver, s life both negatively and positively, therefore intervention for this hidden victim is urgently required, Living with and taking care of persons with schizophrenia requires caregivers to adjust to the caregiving role and to their own emotional needs, and the ultimate goal is to integrate the caregiving role into their life, therefore interventions to prepare them to take on this role effectively as well as to maintain their original role and to take care of themselves well are needed, Caregivers need to receive caregiving support from others including professional health care providers, other family members, friends as well as self-help groups to help them to live with and care for their family member diagnosed with schizophrenia effectively, thus those group resources need to be made available at the community level, Caregivers need to apply various skills to provide care for their ill relatives by dealing with aggressive behavior, psychotic symptoms, as well as other facets of their everyday life, ie education, work, socialization, life skills, and other aspects of daily living, therefore caregiving skills training intervention needs to be developed beyond the existing psycho-education group, and, Caregivers express their needs and concerns about the long term care facility and seek sustainable help for their ill relatives. This needs to be conveyed to the policy makers and other related organizations. Conclusions This systematic review aimed to synthesize the best available evidence on the caregiving experiences of families living with and taking care of persons with schizophrenia. The six synthesized findings derived from, qualitative study papers met the inclusion criteria of quality methodology appraisal. Therefore, these findings can serve as robust evidence that reflects the voice of caregivers which in turn can be used to further develop intervention that is suitable for their needs.