Nurse Media Journal of Nursing, 8.
, 2018, 102-112 Available Online at http://ejournal.
id/index.
php/medianers Family Experiences of Mental Illness: A Meta-Synthesis Iril I.
Panes1.
Cyruz P.
Tuppal2.
Mark Donald C.
Reyosa3.
Ma.
Elizabeth P.
Baua4.
Paolo D.
Vega5 Sultan Kudarat State University.
Tacurong.
Sultan Kudarat City.
Philippines St.
Paul University Philippines System.
Tuguegarao.
Cagayan.
Philippines Department of Epidemiology and Biostatistics.
Research Institute for Tropical Medicine - Department of Health.
Philippines Mount Sinai St.
LukeAos Hospital.
New York.
USA Corresponding Author: Cyruz P.
Tuppal .
rcyruztuppal@gmail.
ABSTRACT
Background: Caring for a family member diagnosed with mental illness requires a holistic support system.
However, some families experience the feeling of burden, loss, and stigma affecting the entire family structure.
Therefore, exploring the studies on the family experiences of mental illness is crucial.
Purpose: This meta-synthesis explored the available literature on the family experiences of mental illness.
Methods: An initial comprehensive search was conducted in the following databases such as Web of Science.
Scopus.
PsycINFO.
CINAHL and Ovid-based MEDLINE using the keywords like mental illness, mental disorder, family, family member, qualitative studies and phenomenology.
A total of five qualitative studies and one thesis dissertation published between 2001-2016 that elicited views of family members on their experience of mental illness were reviewed.
A thematic analysis was used to identify, analyze, and report patterns among the data, allowing for specific organization and description and Results: Family empowerment emerged as the grand theme from the perceived effects of mental illness on the family, the process of coping and their perspectives on family empowerment grounded on family experiences.
Conclusion: Despite caring for a family member diagnosed with mental illness imposes threats, it further offers openness, readiness, and acceptance that empower each family to appreciate, acknowledge, and affirm the wholeness of a family member with mental Keywords: Family burden.
family empowerment.
mental health.
meta-synthesis BACKGROUND The World Health Organisation (WHO, 2.
defines mental health as a state of social well-being where an individual realizes oneAos potentials, copes with the normal stresses of life, works productively and fruitfully, and contributes to the community.
However, mental illness interferes with the personAos thinking, feeling, social and daily functioning.
As a result, a family member diagnosed with mental illness becomes a burden to the Mental illness comprises 12% of the total disease burden and has far-reaching effects on the family as members of the social system (WHO, 2.
Some mental Copyright A 2018.
NMJN, p-ISSN 2087-7811, e-ISSN 2406-8799 Nurse Media Journal of Nursing, 8.
, 2018, 103 disorders acquired early in life, become chronic, recurrent and generate immense health Individuals diagnosed with severe mental disorders cannot fulfill the societal roles expected from them at their age and intellectual ability (Borgo.
Ramos-Cerqueira, & Torres, 2.
Severe mental illness is stressful, not only for the individual but also for the entire family as they live with their family rather than in mental health institutions and becomes a burgeoning family concern (Kizilirmak & Kyk, 2016.
Mulud & McCarthy.
Mental illness has been an emerging phenomenon and a global burden (Charara et al.
Elias & Paradies, 2.
Although addressing mental health problems is one of the functions of the government, the burden of care falls onto family members and the communities (Hsiao.
Klimidis.
Minas, & Tan, 2.
Family support provides caregiving roles to the mentally ill member from the admission to discharge (Zauszniewski.
Bekhet, & Suresky, 2.
Stuart and Laraia .
mentioned that approximately 65% of mentally ill live with their families.
Families provide caregiving support, long-term assistance with housing, financial needs, and rehabilitation.
Hence, family support is an essential aspect of recovery and community integration, but the family also has specific needs to be considered Ae psychological, physical, emotional, social and financial.
If these needs are not fulfilled, it leads to caregiver burden.
Indeed, caring for a mentally ill person is very burdensome and has a tremendous impact on the caregiversAo well-being and quality of life .
on Kardorff.
Soltaninejad.
Kamali, & Eslami, 2.
This meta-synthesis was conducted to explore the experiences among families having a family member with mental illness.
Mental illness, which is widely stigmatized, does not have a much social support system as compared to physical ailments, victims of disaster or deaths.
Therefore, caregivers have no choice but to carry their physical, emotional, spiritual and financial needs solitarily.
Although few studies confirmed burden among the family of mentally ill relatives in general, there is still insufficient description about the familyAos perception about the illness and their specific process of coping and perspectives of the effect of the illness in the family system.
Thus, it is essential to better understand the familyAos experiences in taking care of a family member diagnosed with mental illness to provide a broader insight into their shared experience.
PURPOSE
This meta-synthesis aimed to explore the family experiences of mental illness.
METHODS
Meta-synthesis is a technique for combining the results of multiple qualitative studies to produce new insight and understanding (Beck, 2009.
Sandelowski, 2.
The purpose of meta-synthesis is to identify similarities and differences of the findings and delve deeper into the phenomenon from various studies illuminate an integration of language as a Austructure of artifact or culture that must be itself interpretedAy (Sandelowski, 2008.
This interpretive meta-synthesis portrays a distinct, state of the art and direction for highlighting the emerging phenomenon grounded on experiences of family members that offer a novel interpretation of an emerging concept of family empowerment in mental Copyright A 2018.
NMJN, p-ISSN 2087-7811, e-ISSN 2406-8799 Identification Nurse Media Journal of Nursing, 8.
, 2018, 104 Records identified through database searching .
= 1,.
Additional records identified through other sources .
= .
Eligibility Screening Records after duplicates removed .
= 1,.
Records screened .
= .
Records excluded .
= .
Full-text articles assessed for eligibility .
= .
Full-text articles excluded, with reasons .
= .
Unclear Irrelevant Irretrievable Included Studies included in quantitative studies .
= .
Studies included in qualitative studies .
= .
and dissertation .
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Figure 1.
The search strategy selection of the included studies An initial comprehensive search was performed in the following databases such as Web of Science.
Scopus.
PsycINFO.
CINAHL and Ovid-based MEDLINE.
The keywords were mental illness, mental disorder, family, family member, qualitative studies and A total of 1,952 studies were uploaded in the reference manager, and 1,877 were removed as duplicates.
An additional manual search was also performed, but there were no available articles that accounted for the phenomenon of interest.
There were seventy-five articles were further screened for general review which resulted in 26 eligible articles.
Twenty articles were removed that did not meet the selection criteria including quantitative, book reviews, book chapters, editorial materials, proceeding paper, and commentaries.
Also, there were irrelevant studies that did not reflect the experiences of family members and unclear methodology.
For the final review, there were five qualitative studies published between 2001-2016 and one thesis dissertation that elicited family experiences of mental illness.
The researchers extracted all the themes Copyright A 2018.
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, 2018, 105 from the reviewed articles and encoded using NVivo Plus 11 as shown in Table 1 in appendix (QSR International, 2.
The approach to synthesizing the findings in a meta-synthesis is an iterative process to generate new insights about the phenomenon of interest.
Various researchers surmised that summarising qualitative results can be aggregative or interpretive (Beck, 2009.
Sandelowski & Barroso, 2.
In this meta-synthesis, the researchers used an interpretive approach in conjunction with a Auholistic understanding and theory developmentAy (Aguirre & Bolton, 2014, p.
A thematic analysis was used to identify, analyze, and report patterns among the data, allowing for specific organization and description of a series of foci and interpretations of the various aspects of the subject The analysis was performed to recognize the themes and the following attributes via codes/descriptors in the disciplines and contexts to justify or express the idea.
RESULTS
The interpretive summary of metaphors of the selected qualitative studies are the hallmark findings of this meta-synthesis.
The grand theme emerged as Family Empowerment with three sub-themes Perceived effects: Emulating the burden and loss.
Process of coping, and Perspectives on family empowerment as shown in Figure 2.
Figure 2.
The grand theme of the reviewed studies Perceived effects of mental illness: burden and loss There are multifaceted effects of mental illness on the family including burden and loss.
These perceived effects also impose threats to the quality of life and relationships within the family structure.
Social burden and stigma These are the most commonly reported experience of the family that resulted in ineffective social relationships and poor interpersonal interaction.
Social exclusion and withdrawal are central to a stigmatizing experience of the relative (Angermeyer.
Schulze, & Dietrich, 2.
The majority of the respondents observed that friends, neighbors and even relatives gradually withdrew from the patient or the whole family.
Some caregivers also reported that their social relationships are affected because they are not in the position to move and interact freely with others (Ae-Ngibise.
Doku.
Asante, & Owusu-Agyei.
Copyright A 2018.
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, 2018, 106 Over one in ten caregivers avoided social events (Girma et al.
, 2.
, while other families reported that aside from the burden of caring for the patient, they felt ostracised and isolated (Marimbe-Dube, 2.
On a different note, guilt is one of the most spiteful experiences specifically among mothers having the responsibility for their childrenAos upbringing (Angermeyer et al.
, 2.
One mother with two schizophrenic sons reflected.
Auprofessionals always ask for childhood experiencesA which causes guilt andA is stigmatizingAy (Angermeyer et al.
, 2003, p.
Another mother commented that parentsAo upbringing could also be a AucontributingAy factor to the illness (Stein & Wemmerus, 2001.
For adults who derive a strong sense of personal and social identity from their role as parents, this condition has challenged them what it means to be parents.
They question their actions, recalibrate their expectations and even self-inflicting guilt on their childAos illness.
Emotional and psychological burden Sleeplessness, endless worrying, the feeling of embarrassment and exhaustion are some of the reported emotional disturbances.
Some families developed depression and somatic illnesses .
, hypertensio.
due to severe emotional and psychological distress.
Intense fear is another factor that affects the emotions.
In the process of caregiving, some respondents described an experience of verbal and physical harm from those who are violent, assaultive and combative.
Despite such experience, some families still ensure that they can meet the patientAos needs (Marimbe-Dube, 2.
Some families even claimed they suffer more than those who are ill because of a sense of frustration, in which they mentioned that only the Audeath of the patient a way out for the burden to end (Ae-Ngibise et al.
, 2.
Financial and economic burden For some families, the financial burden is a result of having to leave their jobs for the caregiving role.
The responsibility of caring lies within the family, and they have to ensure that they finance the patientAos upkeep (Marimbe-Dube, 2.
Families would always want their ill family member to benefit from the optimal treatment and other relevant services but afflicted with financial constraints (Angermeyer et al.
, 2.
Majority of the caregivers are not employed, or some though employed but cannot sustain the daily expenses.
Some would resort to selling their belongings, livestock, personal clothing, and others to support the need of the mentally ill.
Also, respondents mentioned that the illness led to problems with work integration.
One participant said: AuMy boss showed little understanding for the loss of working hoursAy (Angermeyer et al.
, 2003, p.
Pervasive loss Families perceived mental illness as such because it does not only involved the affected individual, but its effect spreads throughout the entire family.
In a qualitative study of six families in Northwestern Ohio, the authors described the impact of mental illness in the family as a loss of a healthy life.
The family reported the lost aspects of their ill-membersAo normal life that includes loss of skills and abilities, personal relationships, prized possessions and place in society.
Parents in the study expressed a broad sense of sadness and frustration in their inability to bring back their child to AunormalAy (Stein & Wemmerus.
Copyright A 2018.
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, 2018, 107 Process of coping: concealment vs.
In the review of the different studies, most participants reported to either conceal the illness or being open about the situation.
Concealment Being secretive and minimizing contact with the community is one way that some caregivers, particularly those from culturally diverse backgrounds, coped with their situation (McCann.
Lubman, & Clark, 2.
Girma et al.
noted that caregivers are worried that other people would discover the patientAos condition and felt the need to keep the illness a secret and isolate themselves.
The fear of experiencing stigma from others deterred caregivers from being open about the problem (Marimbe-Dube, 2.
avoid discrimination, many families conceal the illness from neighbors, friends, and relatives or disguise the illness as a depression (Angermeyer et al.
, 2.
Denial and blame from others also resulted in illness concealment (McCann et al.
, 2.
Caregivers especially women reported being blamed for the illness of the family member (MarimbeDube, 2.
Loss of status is also expressed by some caregivers who adopted a secretive style of coping (McCann et al.
, 2.
Loss of status accompanied by feelings of embarrassment, mainly when disturbing and dramatic situations occur during acute Loss of status also includes a troubled relationship and problems with work Openness Some families adopted an open approach to coping with their situation.
From being open, some caregivers responded to their family membersAo illness by disclosing their status and having contact with others (McCann et al.
, 2.
This coping approach includes openness to family, friends, and community.
By doing so, support is strengthened, recognized and accepted.
The type of support given varies from emotional support, financial and shared responsibility for care.
Families also reported that although they are cautious at times about sharing their experiences with others, they understood that there is no wrong for having a family member diagnosed with a mental disorder.
As a result, it nurtures the feeling of being listened to.
Furthermore, families who do not have doubts keep on receiving emotional, psychological and practical support.
One participant reported: AuI have friends that ring me often to see how we are going.
I have not hidden it.
I may have at first, but I certainly donAot know.
I do get a lot of phone supportAy(McCann et al.
, 2011, p.
Perspectives on family empowerment Support and care from family members during periods of illness are significant for people with mental disorders.
Moreover, families perceive that they have substantial roles in coping despite the considerable negative consequences it imposed on their quality of life (Larson & Corrigan, 2.
Based on their experiences, respondents provided their perspectives on various interventions towards empowerment.
Addressing negative public image The negative public image of mental disorders is one of the causes of stigma.
Most of the relatives participating in the focus group believe that those people suffer from mental disorders are violent and dangerous (Angermeyer et al.
, 2.
Relatives claim that the Copyright A 2018.
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, 2018, 108 media is responsible for disseminating this negative view.
Media coverage of mental disorders is almost exclusively limited to showing persons as being violent.
One participant narrated: AuThe media never portrays persons with mental illness living a normal life or as being creative.
It would be good to show mentally ill people trying to live a normal life, not only murderers or homicidesAy (Angermeyer et al.
, 2003, p.
Also, unequal acceptance or status of mental and somatic illness by the public poses another negative image of mental illness.
There are limited information and advice for mental health practitioners.
and, when there is, it is usually in the context of negative Families felt that this negative image could be addressed through education, information, and promotion in understanding the disorder (Ae-Ngibise et al.
, 2015.
Angermeyer et al.
, 2.
Improved mental health care Some families described the poor quality of mental health care.
According to Angermeyer et al.
relatives felt health professionals are insensitive to their needs, fears, problems, and worries.
Also, the relatives believe that professionals regard them as an additional burden or source of irritation.
In a similar vein.
Ae-Ngibise et al.
, almost all the participants unanimously agreed that there is no external or community support in taking care of the patients.
There should be improvements and changes in mental health care service delivery such as cooperation between and among the professionals and relatives, better education and training, adequate supervision and equitable distribution of mental health services.
Family members also strongly felt that support groups for people with mental disorders and family members would help in the coping process.
DISCUSSION
This meta-synthesis illuminated the experiences among families having a member diagnosed with mental illness.
Three themes with corresponding sub-themes emerged such as perceived effect, the process of a family coping with the illness and perspectives towards family empowerment.
Burden and loss were the subthemes identified based on the familyAos perceived effect of mental illness.
Burden encompasses almost all aspects of family life Ae psychological or emotional which also resulted in physical problems, financial and social burden.
Furthermore, loss Ae specifically the loss of healthy life emerged as one significant effect of mental illness on the family.
In the process of coping with the illness, families adopted either concealment or openness In being open with the family and friends, family members acquired support in various aspects Ae emotional, financial and sharing responsibility of care.
Openness and contact with others enable them to obtain greater support and acceptance and help in destigmatizing the illness.
However, transparency also leads to stigmatization, exclusion, withdrawal, and concealment (Angermeyer et al.
, 2003.
Krupchanka et al.
, 2016.
Larson & Corrigan, 2008.
Muralidharan.
Lucksted.
Medoff.
Fang, & Dixon, 2016.
van der Sanden.
Pryor.
Stutterheim.
Kok, & Bos, 2.
McCann et al.
mentioned concealment helps shield the caregiver and the patient from stigma and minimizes the likelihood of devaluation and exclusion.
However, it denies the caregiver and family member from having contact with and receives support from others.
Concealment reinforces social isolation and alienation from the community, and it heightens the familyAos overall burden of care.
Concealment may also result in depriving the person to Copyright A 2018.
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, 2018, 109 access timely and adequate care of the illness (Krupchanka et al.
, 2016.
van der Sanden et al.
, 2.
Family empowerment is an essential indicator of a familyAos ability to access and effectively utilize the mental health system to meet their needs.
In the familyAos perspective, their perceived burden of care and loss could be addressed through proper education and massive information dissemination about mental illness, thereby promoting Family empowerment helps the family and community in solving the burden, loss and stigmatizing experiences with mental illness.
Due to the paucity of evidence about family empowerment at a theoretical and philosophical underpinning, future scholarly work will be undertaken to explore this phenomenon of interest using various methodologies.
Owing to the rigor of this meta-synthesis, the researchers maintained an audit trail, research team meetings for content validity, and expert peer Raw data from the quotations support the inferences drawn and grounded in the experiences of the family members.
CONCLUSION
Family caregivers of mentally ill patients experience high levels of burden and loss in which they cope with either positive .
or negative .
From their perspective, family empowerment helps the family and community in addressing the burden, loss and stigmatizing experiences with mental illness.
There is a need for the development of education campaign and information dissemination to understand better the concepts and therapeutic interventions for mental illness along with family Through such campaigns, it will facilitate the development of tailored-fit strategies in addressing the burden of care and loss among the family members.
The government should continue to assess, monitor, and evaluate their funded mental health programs to meet the needs of the patient and their family.
The development of a community treatment program will also strengthen collaboration among healthcare providers, families, and the entire community.
REFERENCES