Introduction
According to the World Health Organization (WHO), mental health is defined as "a state of well-being in which an individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and is able to make a contribution to his or her community".1(p.1) Attempts have been made to clinically measure and categorize mental illness, such as mild, moderate and severe/serious mental illness.2 Severe mental illness can be defined as a mental, behavioral or emotional disorder in adults, diagnosable during the assessment or during the past year, and meeting diagnostic criteria, with severe functional impairment interfering with life activities.2,3 Some conditions, such as schizophrenia, bipolar disorder type I, severe recurrent depression and severe personality disorders, are often considered severe or serious mental illness.4 The annual prevalence of mental illness is 25%5 and 0.8% to 6.8% of severe mental illness.6 Some studies include dual diagnosis of substance use and mental illness,7 but this review will only consider severe mental illness.
With the deinstitutionalization movement in the second half of the 20th century, patients with mental illness are often transferred from mental health institutions to community-based settings, mostly living with relatives8 who become caregivers, also known as carers. Broader definitions of informal caregivers include family, friends or neighbors. In this review, family caregivers are individuals providing unpaid care to a relative. The quality of life of the caregiver of a relative with mental illness has been found to be lower than the average.9 Additionally, this population is more likely to have emotional stress, depressive symptoms and clinical depression.10,11 Research has identified the impact of burden on carers' mental and physical health, economic and daily life, as well as a subjective dimension concerning the lived experience of carers.12 Nevertheless, it is also possible to identify positive caregiving experiences and outcomes.13
Informal care providers, such as family caregivers, need to adapt to the condition of having relatives at home to care for,12 which constitutes a challenge in reconciling professional and personal life.14 The experience of care for a relative with severe mental illness demands the development of coping strategies, both cognitive and behavioral, to better manage ongoing stress.15 The suffering experienced by these individuals could lead to ultimate questions about life. The spiritual and religious dimensions of coping have been defined as "strategies, involving relationship with self, others, Ultimate other/God or nature [[horizontal ellipsis]] to cope with their ailments".16(p.833) This definition is based on the concept of spirituality as "a way of being in the world in which a person feels a sense of connectedness to self, others, and/or a higher power or nature; a sense of meaning in life; and transcendence beyond self, everyday living and suffering".17(p.93) As such, spirituality may represent a critical dimension in living and overcoming this situation.
Both believers and non-believers experience religious and spiritual struggles.18 Spiritual coping strategies comprise the following: finding meaning; gaining control; gaining comfort and closeness to God; gaining intimacy with family, friends and others; achieving a life transformation; connecting with the inner self through meditation/contemplation; acknowledging personal strengths; finding hopefulness in the future; helping others and appreciating nature.19-21 Spiritual aspects of the families' experiences have been explored in primary studies.22-25
Spiritual needs include, but are not limited to, obtaining a sense of meaning and purpose; experiencing love and harmonious relationships; receiving and giving forgiveness; identifying a source of hope and strength; having a greater sense of trust; expressing personal beliefs and values; exercising spiritual practices; and expressing one's concept of God, deities or divinity.26
Spiritual or religious practices are the operational aspects of spirituality/religiousness, and five categories have been defined: religious practices (going to temples, attending religious events, praying, using religious symbols in private); humanistic practices (practicing good actions, helping others, considering others' needs or thinking about those in need); existential practices (reflecting about the meaning of life, increasing self-awareness and working on self-realization); gratitude/reference (experiencing and valuing beauty, feeling of gratitude and wondering awe); and mind-body practices (meditation, rituals and mind-body discipline).27
Quantitative research has concluded that the use of religious coping strategies helps family caregivers by enhancing their wellbeing when caring for a relative with mental illness.28 Moreover, religiosity has been associated with reduced depression, better self-esteem and self-care.29 The strength of religious belief seems to contribute more to the caregiver's wellbeing than religious practices,28 and personal religiosity predicts better adjustment than attending religious services.29 Also, several instruments to measure religious/spiritual coping have been developed, widely translated and validated in different populations.19,30,31 A concept analysis of spiritual coping using Beth Rodgers' model, and based on qualitative studies, has contributed to a suggestion of new nursing diagnoses to be included in NANDA International32 These aspects underline the importance of spiritual coping in nursing care.
In this review, spiritual aspects of the experience comprise spiritual needs, spiritual coping strategies, and spiritual or religious practices mentioned by the family caregivers. These will be used to extract and analyze the data of the studies. Although quantitative research states that spirituality and religiosity play an important role when caring for a relative with mental illness, it is important to synthetize the experience of caring based on a qualitative approach, which could inform humanistic and holistic mental nursing. Understanding the experiences of the family caregivers may help nurses to better identify and address the spiritual coping strategies and required support.
A preliminary search for existing qualitative systematic reviews on this subject has been conducted on the following databases/sources: PROSPERO, Cochrane Library, Campbell, JBI Database of Systematic Reviews and Implementation Reports, PubMed and CINAHL. A systematic review on caregiving experiences of families living with persons with schizophrenia was found.33 Some findings underline religiosity as a dimension to be considered, but these seem reductionist when approaching spirituality or spiritual aspects as part of a broader concept. A wider approach could comprise other aspects of spirituality, such as needs and spiritual coping strategies. Additionally, the existing review will not specifically address the spiritual aspects of the families' experiences, which are paramount for designing specific nursing interventions.
This review aims to identify the spiritual aspects of the family caregivers' experiences when caring for a community-dwelling adult with severe mental illness.
Inclusion criteria
Participants
This review will consider studies that include caregivers providing care to a member of their immediate family who is older than 18 years and experiencing severe mental illness, which is defined as a mental, behavioral or emotional disorder, diagnosable during the assessment or during the past year, meeting diagnostic criteria, with severe functional impairment interfering with life. Severe mental illnesses include, but are not limited to, conditions such as schizophrenia, bipolar disorder type I, severe recurrent depression and severe personality disorders. Relatives with neurodevelopment disorders, substance-use disorder and dementia will be excluded.
Phenomena of interest
This review will consider studies that included the spiritual aspects of family caregivers' experiences when caring for a relative with severe mental illness, such as spiritual coping strategies, spiritual needs and spiritual or religious practices mentioned by the family caregivers.
Context
The review will focus on family caregivers providing care to a community-dwelling relative with severe mental illness staying at home or daycare centers. Studies considering full-time institutionalized relatives with severe mental illness will be excluded.
Types of studies
The review will consider studies that focus on qualitative design and data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.
Methods
This review will use the Joanna Briggs Institute's (JBI) systematic review of qualitative studies methodology34 to define the search strategy, study selection, assessment of methodological quality, data extraction, data synthesis and confidence assessment.
Search strategy
The search strategy aims to find published and unpublished studies in the English, Spanish and Portuguese languages. No date limit was defined to this search. A three-step search strategy will be utilized in this review.
An initial search, limited to PubMed and CINAHL, has been undertaken to identify articles on this topic, using the following keywords: caregiver, experience and mental illness, followed by an analysis of the titles and/or abstracts and the index terms of each. This informed the development of a search strategy including identified keywords and index terms, which will be tailored for each information source. A proposed search strategy for PubMed is provided in Appendix I.
A second search using all identified keywords and index terms will then be undertaken across all included databases. Finally, the reference lists of all included studies will be screened.
The databases to be searched include: CINAHL complete (by EBSCO), PubMed, PsycINFO, Mediclatina (by EBSCO), LILACS and ATLA Religion Database. The search for unpublished studies will include OpenGrey, RCAAP (Repositorio Cientifico de Acesso Aberto de Portugal [Open Access Scientific Repository of Portugal]) and Banco de teses da CAPES (Brazil [Thesis repository of Brazil]).
Study selection
The search records will be collated and managed using citation management software: EndNote V8.2 (Clarivate Analytics, PA, USA). Duplicates will be removed. Articles searched will then be assessed for relevance to the review, based on the information provided in the title and abstract, by two independent reviewers. Any disagreements that arise between the reviewers will be resolved through discussion. The full article will be retrieved for all studies that meet the inclusion criteria of the review. In case of disagreements or uncertainties between the two reviewers about the relevance of a study from the title and abstract analysis, the full article will be retrieved. The reasons for excluded full-text studies will be provided in an appendix in the review.
Assessment of methodological quality
Papers selected for retrieval will be assessed by two independent reviewers for methodological quality prior to inclusion in the review, using the standardized JBI Critical Appraisal Checklist for Qualitative Research.34 Any disagreements that arise between the reviewers will be resolved through discussion. Studies will be scored with one point per criterion, and those with fewer than six points will be excluded from the review.
Data extraction
Data will be extracted from papers included in the review by two independent reviewers using the JBI qualitative data extraction tool.35 The authors of the primary studies will be contacted for clarification or missing information. The data extracted will include specific details about the populations, context, culture, geographical location study methods, and phenomena of interest relevant to the review question and objectives. Findings, and their illustrations, will be extracted and assigned a level of credibility.
Data synthesis
Qualitative research findings will, where possible, be pooled using the JBI System for the Unified Management, Assessment and Review of Information (SUMARI; The Joanna Briggs Institute, Adelaide, Australia) with the meta-aggregation approach. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings based on similarity in meaning. These categories will then be subjected to a meta-synthesis to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice in mental health nursing, particularly related to spiritual/religious coping facilitation. Where textual pooling is not possible, the findings will be presented in narrative form.
Assessing certainty in the findings
The ConQual approach will be followed and the quality of the evidence will be presented in a Summary of Findings.36 The included studies will be initially ranked as "high". Then each study will be graded for dependability using five specific questions from the critical appraisal scores. According to the score, the paper's ranking will remain unchanged or will move down one or two levels. In the qualitative studies, synthesized findings will be evaluated for credibility by counting and categorizing the findings as unequivocal, credible or not supported. When all findings are unequivocal, the synthesized finding's score will remain unchanged. However, if there is a mix of unequivocal/credible findings, each synthetized finding will be downgraded.
Acknowledgements
The authors acknowledge the support of the Health Sciences Research Unit: Nursing (UICISA: E), hosted by the Nursing School of Coimbra (ESEnfC).
Appendix I: Search strategy for PubMed
Search conducted on September 25, 2018
References