Psychosocial needs of the parents of children with mental disorder

Abstract


Background
Mental disorder is a syndrome or behavioral/psychological pattern with clinical signi cance that causes disability or discomfort in the individual (1). Having a child with physical or mental disability causes notable changes in the organization and structure of family. This has a determinant effect on the process of rehabilitation and independence of the family (2).
Depending on the impairment, having a child with impairment may lead to physical and mental problems, or nancial pressures on the parents (3). These parents have to watch physical and behavioral changes in their children, which is a source of severe emotional pressure and discomfort (4). Parents of children with developmental and mental disorders have to deal with several challenges (5). Such challenges might include behavioral challenges of the child, participation in looking after the child, communication with experts in the treatment and follow up process, and social interaction between the child and family. Add to these challenges other things like a sense of incompetence, anxiety, nancial problems, changes of roles, poor social adaptation, increased social isolation, and disappointment with the care system (6).
The risk of behavioral problems and emotional disorders in a child with behavioral and mental problems may increase, when they are exposed to a stressful family situation and the care givers are not capable of covering the emotional-social and cognitive needs (7). Studies have shown that parents who received supports in the area of taking care of their sick children, tended to have more emotion and affection towards their child (8). Provision of quality and proper services to cover the needs of such families can improve their quality of life and attenuate the pressure on family system (6).
There are ever-increasing needs for studying the outcomes of mental disorders of children in families.
Such studies deepen the awareness of the pressure and the load of responsibility on these parents (9).
Recognizing and answering the needs of parents of children with mental disorders can improve the quality of lives of these parents. This also contributes to a higher quality of life in the society (10).
Doubtlessly, providing e cient and proper support by organizations in charge of such services entails realizing the psychosocial and economic needs beforehand. Through this, it would be possible to concentrate the proper supports on the aspects that need more support (11).
To nd the needs and problems with regard to a speci c phenomenon, there is a need to study the individuals who have experienced the phenomenon. Qualitative studies are good answers for this need (12). Qualitative content analysis is one of the common approaches to survey phenomena in society.
Content analysis is a reliable study method for an orderly and objective description of the content collected through communication (13). Through this, the researcher determines frequency of incidence, meaning, and relationship between the words and concepts in a text and then the messages of the text, author, addressees, even the culture and time that host the words and concepts are inferred (14). Using this approach, the present study is aimed at determining the needs of the participants based on their expressions. In addition to elaborating on the psychosocial needs of the parents of children with mental disorder, the present paper is a step towards developing proper approaches to meet such needs.

Design
Taking the objective of study into account, this qualitative study was carried out using conventional content analysis (13).

Setting
The study environment was children and adolescence psychology wards in Mohammad Kermanshahi and Farabi hospitals.

Participants
The participants were all fathers and mothers who, during the study, had a 10-18 years old child under psychological treatment for a diagnosed mental disorder in the hospitals. The researcher used purposeful sampling to select the parents who met the inclusion criteria and were interested in participating in interviews. Different variables were taken into account in selecting the participants such as parent's age, type of the disease, term of disease, parent's education level, and family condition (economic and cultural conditions) so that the maximum variation was ensured in the sampling process.

Data Collection
Information gathering was done through deep and semi-structured interviews. After selecting the participants, they were asked to sign a written letter of consent. Interviews were private and face to face at different hours of the day (morning and afternoon) at a quiet and peaceful environment in Farabi and Mohammad Kermanshahi hospitals in Kermanshah city. The interviews would be recorded only after the participants would give their consent. In addition, the interviewer would take note through the interview. The term of each interview depended on the energy of the participant to avoid causing any discomfort for the participant. The average time of interviews was 50-60 min. The interviews went on based on the guiding questions of which the validity had been con rmed by experts beforehand.
Some of the questions asked in the interviews: -How your social and carrier relationships are affected by having a child with mental disorder?
-What is your opinion about the needs of the parent of a child with mental disorder?
-What helps do you need to deal with your child's disease?
-What is the best way to support parents of a child with mental disorder?
-What measure can ensure mental peace of parents of a child with mental disorder?
Open questions would be asked throughout the interviews to delve deeper into the details of answers. The interviewer would also bring back the participant to the main subject should the participant wandered from the topic. The interviewer would use probing questions at the right moment to lead the interview towards shedding more light into the phenomenon under study.
In addition, the interviewer was completely familiar with the local accent, which gave him a better chance to glean richer information.

Data analysis
The data was analyzed using qualitative approach based on Graneheim and Hundman's qualitative content analysis (13). After transcription and to gain a general impression of the different aspects of experiences and attitudes, the texts were read for several times. Then the sentences were broken into Results Totally, 21 interviews were conducted with the parents of 10-18 years old children with mental disorder. Mean age of the participants was 44 with max and min ages of 58 and 37 respectively. Mean age of the mothers was 42.62 years with max and min ages of 52 and 37 respectively. In addition, mean age of the fathers was 48.5 years with max and min ages of 41 and 58 years. Mean age of the children was 13.42 years with max and min ages of 17 and 10 respectively.
Totally, 415 primary codes were extracted and after removing similar codes, 302 codes, 16 subcategories, seven categories, and two themes were extracted (Table 2). semantic units comprised of sentences or a paragraph and the primary codes were developed using terms and works close to those used by the participants. Eventually, the codes were categorized based on similarities and differences and categories formed groups based on similarity, connection, and continuity.
Through this, categories were organized in a meaningful conceptual pattern and the relationships between the data were determined, which led to extraction of themes.

Rigor
To ensure rigor of the data, the four measures proposed by Guba and Lincoln (creditability, transferability, dependability, con rmability) were used (15). The authors' long history of working at the study site was effective in winning the participants' trust. Letting the participants to review the extracted data for con rmation of the data and codes improved con rm ability of the data.
Following maximum variation as the sampling strategy to cover a wide range of participants based on demographic characters improved creditability of the data. In other words, the codes and categories were examined by several therapists and researchers to ensure dependability of the data. To ensure transferability of the data, the ndings were shared with several non-participating parents of children with mental disorder. Member check by the participants were used to support authenticity of the data and codes. The codes that were not representative of their viewpoints were modi ed.  The need for being accepted Data analysis showed that due to the hardships and emotional needs, the parents kept looking for acceptance and being understood by others. The parents highlighted the need for others' approval as such approval alleviated the sense of guilt. In addition, being judged by others really bothered them. This category consists of two subcategories of being accepted and the need for approval. "We would love being treated with respect by others. It is not our sin that our child is sick, we have done nothing wrong…" (No.1).
"I really feel good when someone tells me the I am a good mother for being so persistent to cure my child's disease…" (no.13).
"I would like it that my husband's family see how hard I work to take care of by child. I do not like them to think that I am an inconsiderate mother…" (no.21)

Social needs
The need for social support Another theme that was revealed through data analysis was the need for social support. The parents who felt lonely due to their child's disease felt the need for social support more than ever. They underscored new problems and needs, mostly in social relationships, after their child's disease. This theme consisted of two subcategories of de-stigmatization and necessity of cultural developing. "People say that this mental disease is hereditary as my sister in laws was hospitalized for a while. Now, we do not see any chance for our older daughter to nd a suitor." (No.9).
"I feel that we have lost our dignity among our relatives and in the neighborhood. I can see this in their eyes as if mental disease is some sort of a sin…" (No.8).
"If it was a cancer, although it is a hard disease, at least there would not be this much talks behind our back…" (No. 7).
The need for welfare This category consisted of nancial helps and social services. The participants clearly expressed that their children's disease and the consequences have caused problems in their livelihood and payment of medical costs. The parents believed that organizations like Welfare Organizations must provide them with better, more diverse, and quality services for the children with mental disorders. "The hospitalization and medication costs are too heavy. My poor husband cannot support all these no matter how hard he tries…" (No.8).
"I do not have a job and my husband is busy with the medication works of our kid. Because of that, we have a lot of nancial problems…" (No.15).
"There is nobody left to borrow money from. We have to borrow money for hospitalization, medications, and other costs and this is very embarrassing…" (No.5).
The need for information support The unknown and complicated nature of mental diseases add to the fear, anxiety, and worries that the parents feel. They are disparate and confused about the proper way of taking care of and supporting the treatment process and at the same time preserving the normal family life. Data analyses showed the necessity for consultation services and interaction with the treatment personnel to learn about the patient's condition and how to help them. "This is our youngest girl. She was ok at rst, but then she showed the symptoms. The doctor says that it is hereditary, but I do not understand it…" (No.9).
"I have read a few books and surfed the Internet about my boy's problem, but these cannot replace a face to face consultation where I can ask my questions…" (No.13).
"It is much better when the doctor gives us enough time to talk to us and listen to what we have to say…" (No.5).
The need for family support Data analyses showed that the decreased family supports and special situation of the children cause more problems and crises for the parents. The participants highlighted the serious need for family support especially the spouse, children, relatives, and friends' support. "The gap between my wife and I widens whenever our daughter is hospitalized. I feel there is a wide distance between us…" (No.6) "I have always had many friends and liked socialization. But now, I do not have the energy even to call them. I feel pity for myself. If wish I could hang around with my friends again and talk to them…" (No. 19).

Discussion
The mental and social needs of the parents of children with mental disorder in Kermanshah City-Iran were elaborated. The results showed that the need for social support and its different elds were among the main needs of these parents. Derguy et al. emphasized on emotional supports for the parents of autistic children (as a social disorder) (16). To explain the ndings, it is notable that the families of children with mental or developmental disorder experience more mental pressure than the normal families. Emotional needs and the need for assurance and peace are of the main needs of these parents.
Studies on the need for alleviation of pain have shown that to eliminate the sense of guilt and restore peace and tranquility, parents need assurance by others (17). The need for support to alleviate pain and hardship of taking care of impaired children has been supported by many studies (18). With regard to the need to induce hope, it is notable that initiation of a child's disease and the lengthy treatment process cause disappointment in the parents with the treatment and recovery. Hope is the subjective forecast about the future that are also rooted in one's beliefs. Hope is also effective in one's behavior in social interactions.
The need for emotional support was another mental need that was frequently mentioned. Kerr et al. argued that emotional needs were among the main needs of the parents of children with cancer (19). Algood et al. concluded that children with impairment need a lot of attention from their parents and this causes more pressure on the parents. This adds to the needs of parents like supportive and emotional needs (8).
Another concept revealed by the study was family attachment and visiting relatives. In their interviews, the parents noted in different ways the need for family and friends' support. Teles et al. argued that the birth of an impaired child causes notable changes in the organization and structure of family (2). In such case, emotional and social support by the care givers to the child are vital. The response of these children's family to such a challenge depends on many factors including the relationship between family members. Pelentsov's et al. nding showed that the sense of imprisonment and limitation, changes in interpersonal relationships, loneliness, and the need to talk to others were among the main needs of these parents (20).
Results showed that the need for social support was another important need of the participants. Social presence and the attempts to keep the previous social relationships (the relationships before the child with mental disorder) intensi es and underlines this need. Failure to meet this need might seriously affect the social activities of these parents so that they might have problems in creating social relationships. This problem disrupts the peace and balance in the parents' lives and also affects the relationship between the parents and the child and their attempt to help the child to adapt and regain their abilities. Boyd argued that being the parent of an impaired child is highly stressful and causes misbalance in the family. Therefore, these parents need more social supports (21).
The participants complained about misunderstanding in the society and their friends about mental diseases especially in children. Meltzer et al. believed that the majority of such parents experienced pressures in their lives. More than one third of these parents said that they had not invited their friends over after appearance of mental problems in their child (22).
Another main need of the participants was the need for welfare. The cost of medical services and lost revenue add to the needs of these parents for nancial and welfare needs. The need for medical insurance coverage was one of the main needs mentioned by the parents. Studies on other causes have also con rmed the need for welfare in the parents of children with mental disorder. Allik et al. argued that the type of childbearing of the children with mental problems and diagnosed pervasive developmental disorder (PDD) were related to poor welfare condition of the parents (23). Forbes et al. showed that parents of children with mental disorder deal with a wide range of problems and needs. One of the main needs was the need for social and nancial support (24). Pelentsov et al. found that the majority of the parents of children with mental disorder (95%) had serious nancial problems (20). These studies are consistent with the present study so that the parents' need for nancial support, medical insurance coverage, and social support is con rmed.
The participants also mentioned the need for information support and consultation services. Information support and social consultation are needed to improve awareness and knowledge about how to deal with such children. Information support and social consultation were of the main needs of the participants.
Kerr et al. argued that the need for information support in the parents of children with physical diseases and disorders even like cancer, which is a prevalent and known disease, was one of the main needs of these parents (19).
The need for family support and the support by the spouse, children, and relatives was highlighted as one of the main needs of parents. Dunn et al. argued that the parents of autistic children demonstrated a lower marital satisfaction and adaptation in their families (25). Lewis et al. found that welfare and adaptability of parents were closely related to family support (5). Marsack and Samuel argued that the responsibility of taking care of a child with mental disorder had a negative effect on the quality of life of the parents. They also argued that informal social support, and family support of such responsibility, and quality of life of the parent had mediatory roles (26). The results of this study highlighted the need for supporting the parents of children with mental disorder through informal social supports.

Conlusion
The results showed that the participants had to deal with several needs and challenges caused by the changes that taking care of a child with mental disorder creates. Such changes and needs have negative effects on all elds of parents' lives including mental and social elds. Timely recognition of such needs attenuates the care pressures on the parents and helps them to realize the objectives of care and rehabilitation programs for their child.

List Of Abbreviations
Pervasive Developmental Disorder (PDD) Kermanshah University of Medical sciences (KUMS) Declarations