Clin Psychopharmacol Neurosci 2014; 12(2): 111-123  https://doi.org/10.9758/cpn.2014.12.2.111
Needs of Siblings of Persons with Psychosis: A Systematic Descriptive Review
Anekal C. Amaresha1,2,3*, Ganesan Venkatasubramanian2,3, and D. Muralidhar1

1Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences, Bangalore, India.

2The Schizophrenia Clinic, Department of Psychiatry, National Institute of Mental Health and Neurosciences, Bangalore, India.

3Translational Psychiatry Laboratory, Neurobiology Research Centre, National Institute of Mental Health and Neurosciences, Bangalore, India.

Correspondence to: Anekal C. Amaresha, MSW, MPhil. Department of Psychiatric Social Work, First Floor, Dr. M.V. Govinda Swamy Centre, National Institute of Mental Health and Neurosciences, Bangalore-560029, Karnataka, India. Tel: +91-80-26995366, Fax: +91-80-26564830, amarmsw@gmail.com
Received: February 17, 2014; Revised: March 25, 2014; Accepted: April 7, 2014; Published online: August 12, 2014.
© The Korean College of Neuropsychopharmacology. All rights reserved.

This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
Keywords: Psychosocial needs, Siblings, Psychosis
INTRODUCTION

Social dysfunction or deterioration, which can interfere in continuing an employment and independent living in the community, is a major feature of psychosis like schizophrenia and related disorders.1,2,3,4) The psychosocial intervention adjunct to pharmacotherapy will help in maintaining medication compliance and reducing schizophrenia symptoms.5) However, the dysfunction caused by the negative symptoms significantly affects the social support of persons suffering from psychosis.6,7) Hence, the family support plays a critical role in the recovery of illness8) and this forms a major support system for persons with psychosis.9)

Research has shown that social support among persons suffering from psychosis is minimal, and primarily consists of immediate family members as compared with the general population.10) Consequently, the primary caregivers have to carry the substantial part of caregiving tasks. Families with minimal social support networks require more support in these tasks. Hence, siblings of persons with psychosis (SOPP) can provide additional social support for their affected siblings.

The empirical literature shows that primary caregivers such as parents and spouses were well researched regarding their psychosocial issues. However, it was noted that in the absence of other primary caregivers, they play an important role in caring for their affected sibling.11,12) In this context, it is important to note that many psychosocial intervention studies with caregivers of psychosis have shown that the number of siblings who participated in the interventions are less compared to the parent and spouse caregivers.13,14,15,16,17,18,19,20,21,22)

SOPP are also negatively affected and share the burden of the illness.23,24,25,26,27) It is important to formulate the targeted psychosocial interventions to alleviate their specific problems and address their specific needs, which might enhance the support system for the affected sibling in the long run. In a limited way, the earlier reviews highlighted the role and importance of siblings in the treatment of psychosis;28) the historical overview and developments of research on siblings;29) and impact of illness on siblings and parents.30) However, they did not highlight the types of psychosocial needs of SOPP that could help us understanding and providing services to this population. Also by reviewing the literature on psychosocial needs of SOPP will help us to understand the limitations in the current studies that are necessary to guide further practice and research with this population. With this background, we aimed to systematically review studies, which have explored the psychosocial needs of SOPP.

MATERIALS AND METHODS

Selection Criteria

We selected and reviewed studies based on the predefined inclusion and exclusion criteria, as given below:

Inclusion criteria:

  1. Studies, which have focused mainly on psychosocial needs of SOPP or schizophrenia or first episode psychosis or severe mental illness and other studies, which have addressed the psychosocial needs as one of the variable.
  2. Studies published from January 1992 to October 2013.
  3. Full text articles in English language.

Exclusion criteria:

  1. Narrative reviews
  2. Research protocols
  3. Conference abstracts or proceedings
  4. Studies other than needs of SOPP

Search Strategy

The primary electronic data search was carried out in PubMed database and hand search was carried out in EBSCOhost, ProQuest, Scopus, and PsychINFO during the months of September and October 2013. The data search was completed on 30th October 2013. The search was performed in PubMed using the combination of four groups of search terms, which were predefined, by using PubMed Advanced Search Builder. To get relevant titles and abstracts, the truncation (*) symbol was added to the most basic word and phrases were quoted to get all the associated terms, which were included in the search. The field of search was restricted to titles and abstracts of publications, using "tiab" PubMed search tag.

Search Terms

The exact combination of four search terms used were:

  1. Sibling* [tiab] OR brother* [tiab] OR sister* [tiab] OR "first degree relative" [tiab] OR "first-degree relative" [tiab] OR "first degree relatives" [tiab] OR "first-degree relatives" [tiab] OR caregiver* [tiab] OR carer* [tiab]
  2. Schizophrenia [tiab] OR schizophrenic [tiab] OR psychosis [tiab] OR psychotic [tiab] OR "severe mental illness" [tiab] OR "severe mental disorder" [tiab] OR "severe psychiatric disorder" [tiab]
  3. Need* [tiab] OR concern* [tiab] OR demand* [tiab] OR want* [tiab]
  4. Emotion* [tiab] OR psychological [tiab] OR social [tiab] OR psychosocial [tiab] OR psycho-social [tiab] OR service [tiab] OR counseling [tiab] OR education* [tiab] OR psychoeducation* [tiab] OR information* [tiab] OR treatment [tiab] OR management [tiab] OR training [tiab] OR welfare [tiab] OR individual [tiab] OR family [tiab] OR parent* [tiab] OR marital [tiab] OR financial [tiab] OR recreation* [tiab] OR respite [tiab] OR emergency [tiab] OR crisis [tiab] OR support* [tiab]

Study Selection

Only studies on SOPP where their psychosocial needs were assessed, as one of the variables was included in this review. Altogether a total of 862 titles for screening were received and 126 of them were removed due to duplication. The remaining 736 titles and abstracts were screened for eligibility. Six hundred eighty-five studies were excluded for not meeting the selection criteria (Fig. 1). This stage of the selection process resulted in 51 studies on psychosocial issues of SOPP, which were further screened for studies on psychosocial needs of SOPP. In the final stage, 44 studies were excluded and other seven full text articles were included for this systematic descriptive review. Among the seven included studies, some of them had also focused on variables other than psychosocial needs of SOPP. However, the findings of those variables were not presented and discussed in this review since the focus was primarily on the psychosocial needs of SOPP.

Data Extraction and Analysis

Data extracted from each study is presented in Table 1, which includes: authors, country and year; aims(s) or objectives of the study; details of the participants which include total number of participants (n=brothers and sisters), age range or mean±standard deviation (SD), ethnicity of the participants, affiliations of the participants where the sample has been selected, details on living with the unaffected siblings; details of the patients, which include total number of ill siblings (n=affected brothers and sisters); age range or mean±SD of affected siblings, diagnosis of affected siblings, and duration of the illness. Table 1 also consisted of materials and methods adopted in the study; study findings in terms needs; and major limitations of the study. Table 2 presents the types of major psychosocial needs across seven studies. The focus of this systematic review was on the psychosocial needs of SOPP, hence the findings of the other outcome variables of the respective studies were not considered for the analysis.

RESULTS

Study and Sample Characteristics

Four studies out of seven were from the USA31,32,33,34); two studies from UK35,36); and one was from Canada.37) The participant's age in these seven studies was between 11 years to 56 years. One study did not report the age of the participants.34) Regarding the sex/relationship of the participants, majority of them were related as sisters of the ill sibling. Caucasian or White British ethnicity was reported by four studies31,33,35,36) while the rest32,34,37) did not report the same.

The siblings were selected through self-help or support groups. Three studies predominantly selected the subjects through the National Alliance on Mentally Ill (NAMI)31,32,33) while the rest selected them from community mental health service programs, other self help groups and psychoeducational workshops.34,35,36,37) Apart from one study35) all other studies did not present data on whether the siblings were staying with their affected siblings during the time at which the studies were being conducted.

Most of the affected siblings were brothers and the age was reported by only 2 studies.31,36) The major group of diagnosis in these studies was schizophrenia and psychosis. The duration of the illness was reported by only two studies ranging from 6 months to 68 years.31,36)

Study Characteristics

Four studies33,34,35,36) in this review predominantly used qualitative research design and two studies used quantitative methods31,32) while one study used the mixed method design.37) Regarding data collection methods, three studies have used individual interviews33,34,36) while two studies used mailed survey method31,37) and one each using the Focus Group Discussion (FGD)35) and survey method.32) The duration of individual interviews and FGD ranged from 30 min to 120 min and it was reported by three studies.33,35,36) Four out of five qualitative studies used audio recording for the data acquisition.33,34,35,36) Three studies used semi structured or topic guide for collecting the data,33,34,35) two studies used questionnaires which included the needs of SOPP,31,37) one study used the descriptive phenomenological approach to understand the subjective experiences and needs of SOPP36) while another study used a brief questionnaire which primarily highlighted issues related to siblings' expectations and attitudes about future care giving of ill siblings which was able to get a few siblings needs.32) Regarding data analysis three qualitative studies used thematic analysis for analyzing data34,35,36); one study used hermeneutic methodology37) and another study33) used Taylor and Bogdan's38) procedures for qualitative data analysis. Apart from these qualitative methods two studies have used quantitative data analysis methods.31,32)

Findings on Needs of SOPP

This review showed that six studies out of seven highlighted the need for more information on illness and symptoms.31,33,34,35,36,37) Those were the top priority needs expressed by the SOPP across the studies. The information on prognosis, etiology, genetic or hereditary risk etc. was some of the inconsistent needs expressed by the SOPP across the studies.

The second most desired need of SOPP was participation in support groups.32,33,34,35,36,37) Two studies have reported that siblings need support groups that specifically include only siblings.32,36)

Five out of seven studies reported the need for help in managing their own psychosocial issues.31,32,33,35,36) These studies reported that siblings required help from professionals and close relatives in managing negative impact on their emotions, relationship issues with siblings, family issues, stigma, social activities, younger siblings wanted individual attention, respite and support in their academics etc.

Five out of seven studies reported needs related to illness management and rehabilitation31,32,34,35,36) which included dealing with and monitoring psychotic symptoms, inactivity, and medications; aggression, depressed mood, self harm and suicidal behaviour; assistance in long term care, support during acute episodes; living arrangements; getting community resources; advice on daily living problems etc.

Four studies reported the need for treatment related information.34,35,36,37) One study observed that the siblings desired for inclusion in the treatment process of ill sibling such as family and individual therapy.33)

DISCUSSION

Psychosocial Needs of SOPP

The review has identified that SOPP have common needs in terms of information on their sibling's illness and symptoms, which corroborates with the results of few studies from China on caregivers of schizophrenia in general.39,40) However the types of educational needs are different among the caregivers, which were information on early warning signs and relapse of illness, side effects of the medications, strategies for solving problems, ways of coping with anger, violence and assaulting behaviour and hallucinations, effective ways of coping with stress etc. The educational needs were contrasted with a qualitative study from India on psychosocial needs of caregivers of schizophrenia, where hierarchical needs of the caregivers showed that they desired for help in managing illness behaviour, managing social vocational problems, help in managing their emotional problems, education about illness etc.41) These illness management needs follows the informational and support group needs in the hierarchy of this review.

Another important aspect highlighted through this review was the need for support groups, which was reported by five studies. Two studies cited specific support groups for SOPP.32,36) Rest of the studies reported that they wanted support groups with peers and family members for mutual help and information sharing.33,34,35) Support groups can fulfill the needs of the siblings and alleviate their issues in caring for a sibling with psychosis. Empirical results show that such groups on caregivers of psychosis were found to be effective in addressing various issues and needs.42,43,44,45,46)

Illness management or rehabilitation related needs was reported by five studies.31,32,34,35,36) A few previous studies reported that managing illness behaviour was the top priority for the primary caregivers of schizophrenia.41,47) However, most often the siblings do not consider themselves as primary caregivers for their ill siblings.36) This differentiates the priority of needs between the siblings and other primary caregivers. Future studies can focus on differentiating the needs between siblings and other primary caregivers such as parents and spouses, which can direct health care providers in personalizing the interventions.

This review found that SOPP need help in managing their own psychosocial issues across five studies.31,32,33,35,36) Wide range of needs was found in this theme, consisting of dealing with negative emotions, family issues and negative attitudes towards ill sibling. Siblings felt they wanted support from professionals and parents to deal with the negative impact of the illness. Younger siblings felt they needed individual attention and support in their academics and respite from home. Siblings also needed social relationships and activities outside the family. This shows that siblings were also negatively impacted by the illness, which was evident from several SOPP studies on negative impact or burden.23,24,27,48,49,50,51)

Socio-demographics and Illness Variables

Regarding socio-demographic information there was a gender disparity among the participants since a major proportion of the siblings who participated in these studies were sisters. Though there are no studies to distinguish the needs of brothers and sisters, however a study on gender aspects of parental caregivers of schizophrenia compares the needs of fathers and mothers, which reports that mothers have higher problems and needs in relation to fathers.52) Therefore, gender differences might be present between SOPP in terms of their needs. The studies of this review are predominantly from USA and UK with white British or Caucasian ethnicity. Hence, the findings of this review are of relevance to these countries with these ethnicities. A study comparing caregiving duties and burden among parents and siblings of persons with mental illness reported that black siblings report more caregiving duties than white siblings but report less caregiver burden.53) Hence, the results of this review might go well with siblings of white British or Caucasian ethnicity than others. A review on caregiver burden in schizophrenia discusses that there is differences in the level of burden and attitudes towards ill relatives, among caregivers of various ethnicities.54) Thus, these ethnic differences might play a significant role in determining the types of needs between SOPP of different ethnicities.

The reviewed studies did not report the living status and duration of illness. Living with a relative of schizophrenia with poor socio-occupational functioning is one of the major predictor of burden.43,55,56) The living status can potentially influence the needs of the siblings since the primary and secondary caregivers might have varying degree of burden because of the time spent for caregiving will vary and also the caregiving roles might interfere in their daily lifestyle.57) The roles and responsibilities carried out by caregivers who are living with or without an ill sibling can determine not only their level of burden and quality of life, but also their needs. One more important observation from this review was that majority of the studies have selected their samples through social support groups such as NAMI and others. Affiliations to support groups potentially mediate some of the psychosocial issues of their members and fulfill some of their needs.42)

These socio-demographic limitations warrants for further studies comparing needs of sisters and brothers, from lower and middle income countries, studies including siblings from different ethnic backgrounds, living with ill siblings and with varying degrees of functionality or chronicity of illness and siblings without support group affiliation.

METHODOLOGICAL LIMITATIONS AND FUTURE IMPLICATIONS

The systematic review has identified several methodological limitations in the studies included, which made the generalization of the results difficult. The majority, five out of seven studies used qualitative methods with small convenient sample. It has been argued that purposive sampling at initial stage and theoretical samplings at later stages of the qualitative studies has some flexibility in acquiring rich data in qualitative designs.58) From this review it was found that there were no direct needs assessment studies on SOPP. The studies included have also aimed at exploring other issues with needs. Hence, studies exclusively on needs assessment of SOPP are required for further understanding of their needs. There were two studies, which were not planned and intended to study the needs of the SOPP.32,34) Among these one study used a questionnaire which was primarily intended to elicit the future caregiving expectations, anticipated difficulties, and need for help.32) The other study34) used the data of a previous study59) which was designed to explore the siblings perspectives on schizophrenia and their family. Mailed survey method was used by one quantitative31) and another mixed method study.37) These mailed survey designs have limitations in terms of missing responses and non-response rates.60) It was evident in the study with a large sample size31) where the data on many socio-demographics as well as needs were missing. It is further recommended that needs of SOPP should be assessed in terms of met and unmet needs to avoid any duplication at the service provision level. Also future studies should discriminate the needs of siblings who are based on their living status with the affected sibling.

This review has some limitations. The quality check for the included studies was not carried out. This review did not include the unpublished literature such as conference abstract and unpublished theses. The less number of studies on the needs of SOPP and majority of the studies from western countries limited its generalizability of findings to other parts of the world. The reviewers did not contact the authors for missing data. Though the current review has these limitations it has its strengths. It is the first systematic review with regard to SOPP and their needs. The findings of this review contribute to the existing knowledge and address the lacunas or limitations in the literature and give the implications for further research in this area.

In conclusion this review suggests that SOPP have primary needs in terms of specific informational and support group needs, these are different in the priority of other caregivers needs. Active inclusion of the SOPP in the on going treatment of their affected sibling will give scope to clinicians to understand their needs and provide necessary interventions. There is a lack of research in this area from Asian and African countries. Further studies from heterogeneous population in terms of gender, ethnicity, living status and illness variables such as diagnosis, duration of illness, functionality etc. could be considered in the future research to substantiate the current findings.

Acknowledgments
ACA is supported by Wellcome Trust/DBT India Alliance. The Wellcome Trust/DBT India Alliance Senior Fellowship Grant (500236/Z/11/Z) to GVS supports this work.
Figures
Fig. 1. Flow chart of selection process. SOPP, siblings of persons with psychosis.
Tables
Table. 1. Summary of study methods and findings

Table. 2. Typology of the psychosocial needs of siblings of persons with psychosis (SOPP)

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