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\def\RunningAuthor{Monisha R and Ganapathy Sankar U}
\firstPage{6532}
\articleType{Original Article}
\receivedDate{18 Mar 2020}
\acceptedDate{23 Apr 2020}
\revisedDate{22 Apr 2020}
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\title{\textbf{What is needed to patients in palliative care - Review of the patients perspectives in palliative care}}
\author{Ganapathy~Sankar~U, 
            Monisha~R\textsuperscript{*}~\\[5pt]{SRM College of Occupational Therapy, SRM Institute of Science and Technology, SRM Nagar, Kattankulathur - 603 203, Kanchipuram, Chennai, Tamil Nadu, India}}

\begin{abstract}
Worldwide the prevalence reports documented that nearly 40 million people needed palliative care, but only 10\% of the population receives palliative care treatment. Many have asked for the palliative care, but only a few receive it. It requires a team of professional to deliver good quality palliative support and care for the people who required it. It doesn't aim to cure any particular set of symptoms, but it aims at the quality of life of the people who were at the end of their life. It supports them physically as well as psychologically. Majority of the researchers in occupational therapy were aimed at analyzing the impact of intervention over the patients in palliative care. But there is a need to examine what patients in palliative care want to prioritize. The review aims to explore the needs of patients in palliative care, which are considered vital for them. The review was conducted with the specific criteria of articles selected from the year 2018 to 2020. Articles which were published in the English language were analyzed, and participants of age greater than 20 years were focused, and their experience was documented. Twenty articles were selected, and all these articles were used one to one interview method. The concept of "occupational therapy and its importance for people at the end of their life'' is identified. The study concludes that continued occupational therapy is vital for everybody in palliative care.
\end{abstract}\def\keywordstitle{Keywords}

\begin{keywords}Everyday life,\newline occupational therapy,\newline participation,\newline palliative care
\end{keywords}
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\makeatletter{\raggedright\textsuperscript{*}Corresponding Author\par Name:\ Monisha~R~\\ Phone:\ ~\\  Email:\ dreamsfuture000@gmail.com
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\section{Introduction}
Worldwide the prevalence reports documented that nearly 40 million people required palliative care, but only 10\% of the population receives palliative care treatment. India, however, it is a developing country with low resources and service providers in providing every people who were at the end stage of their life with palliative care support. Still, however, even in rich countries like the USA, German, Sweden only a few numbers of people receive palliative care. Many have asked for the palliative care, but only a few receive it. It requires a team of professional to deliver good quality palliative support and care for the people who required it. It doesn't aim to cure any particular set of symptoms, but it aims at the quality of life of the people who were at the end of their life. It supports them physically as well as psychologically. 

Few occupational therapists believe that spiritual dimensions were also incorporated in the delivery of palliative care. It aims to help the family members to overcome the fear of losing their loved ones, and it motivates the family members to support the people who were fighting the terminal illness \unskip~\citep{901159:20481184}. 

Palliative care works at four domains like controlling the symptoms, working with a team of multiple-professionals, communication and maintaining a good relationship, mental support for caregivers/relatives. Thus palliative care addresses every aspect of a dying person, and it takes a spiritual as well as a holistic view. 

Delivering the care with the help of multi-professionals as a rehabilitation team is the cornerstone for the successful delivery of palliative care. In India, rehabilitation team members were united under one roof for the delivery of palliative care. Occupational therapy associations mentioned that occupational therapists play a vital role by facilitating the patients in palliative care to continue living their values and one life by fulfilling their wishes and needs \unskip~\citep{901159:20481251}.

The main drawback of conducting these types of review and interview is the willingness of those patients in the last stage of life is low, and they don't want to cooperate for any research studies. The primary researcher felt difficulty to make the participants selected for the current study to reveal what are the needs they want in palliative care \unskip~\citep{901159:20481259}. 

He felt tough to convince the participants in the study to understand the need to enrol in the study, and they attended counselling sessions to get involved in the study. Many researchers instead of motivating the patients in palliative care, they make the research simplified by engaging the caregivers to participate in the study; they quoted reasons like ``I don't want to stress the patients in palliative care'' and ``I don't want to give burden to the patients''. One researcher Black he had surveyed patients in palliative care \unskip~\citep{901159:20481254}

Considering all together, there is a lack of sufficient knowledge regarding what patients need in palliative care \unskip~\citep{901159:20481262}. The current research aims to enlighten the needs of patients in palliative care. \unskip~\citep{901159:20498574}
    
\section{Methodology}
This research was done using a scoping review method, and this method is selected to explore the research area, and it gives an exact way for future researchers. Scoping study always explores the research question, and it identifies relevant literature related to it, later it charts data, and finally, it ends with summarizing the results. The current study identifies research articles based on the criteria of research. Inclusion criteria fixed for this current research is, we included research articles published in the year 2018 to 2020 in English language and participants selected were of age greater than 18 years with a life-threatening disease without the possibility of cure and finally the participants should be willing to share the experiences. 

An exclusion criterion includes articles published from unrecognized search engines and journals. Keywords used to select the research articles were palliative care, experience, terminally ill patients, and end of life. Searches were conducted between January 1, 2019, and January 1, 2020 (Figure~\ref{f-a6e551d8ada0}). The decision to include the articles for the research includes various steps like reading the relevant titles, and citations were also considered while selecting articles.\textbf{\space }


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\caption{\boldmath {Process of Data Collection}}
\label{f-a6e551d8ada0}
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\begin{table*}[!htbp]
\caption{\boldmath {Review of Research Articles on Patients Perspectives in Palliative Care} }
\label{tw-effc7c0a2f75}
\def\arraystretch{1.1}
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\centering 
\begin{tabulary}{\linewidth}{p{\dimexpr.24915\linewidth-2\tabcolsep}p{\dimexpr.27205000000000002\linewidth-2\tabcolsep}p{\dimexpr.22794999999999998\linewidth-2\tabcolsep}p{\dimexpr.25085\linewidth-2\tabcolsep}}
\tbltoprule \rowcolor{kwdboxcolor}\cAlignHack Author, Year & \cAlignHack Aim  & \cAlignHack Methodology & \cAlignHack What is Needed for Patients in Palliative Care\\
\tblmidrule 
\unskip~\citep{901159:20481260} &
  Addresses the perspectives of trying to work with advanced cancer &
  7 patients of both gender of age 40-79 were included &
  To maintain themselves throughout the disease process.\\
\unskip~\citep{901159:20481178} &
  To understand quality of life domain in dying individuals in disease process &
  8 patients of both gender of age 50-80 years &
  To continue to live independent and get involved in all the activities of life\\
\unskip~\citep{901159:20481264} &
  To examine the people in terminal illness &
  32 patients of age 27-80 &
  To live as long as one live\\
\unskip~\citep{901159:20481257} &
  To understand the meaning of hope from cancer patients &
  17 patients of age 50-85  &
  Living a normal life\\
\unskip~\citep{901159:20481261} &
  How palliative care works at the end of life &
  After the patient's death, palliative care focuses primarily on bereavement and support of the family. &
  Instead of doing nothing, want to engage in all the activities of daily living, need of joy and pleasure.\\
\unskip~\citep{901159:20481256} &
  Palliative Care in India: Current Progress and Future Needs &
  limited national palliative care policy and lack of institutional interest in palliative care &
  Planning small stay out away from the hospital\\
\unskip~\citep{901159:20481258} &
  To examine the experience of cancer patients &
  27 patients were included &
  To control dying\\
\tblbottomrule 
\end{tabulary}\par 
\end{table*}

    
\section{Result}
Palliative care is a new and growing area of research. Where the researchers focus on the methods of delivering various forms of therapies from multiple rehabilitation professional fields rather than considering what the patients need? So far, there is a limited number of research papers addressing the wishes of patients approaching palliative care should be taken into consideration. Palliative care is always an exception among researchers. When cancer research is compared with palliative care research, it has been proved that in numerous papers addressing the patients experience with cancer was considered. But no researcher has paid attention towards palliative care in the past \unskip~\citep{901159:20481267}. 

The articles which were included in the study consisted of open-ended interviews, and they are qualitative studies. Interviews conducted in the studies were face to face, and the setting was the interview is conducted in patients home or hospital. Researchers allowed the patients to talk and share the information relative to palliative care without any hesitation, and the researchers 7 dictated a few open-ended questions. But the majority of the articles included in the study analyzed patients, and their environment belongs to western countries \unskip~\citep{901159:20481265}. 

Article results were gathered under the theme" occupational therapy for people at the end of life" when the patients were questioned regarding the occupational status, many of them talked about it, but only a few mentioned it specifically. (Table~\ref{tw-effc7c0a2f75}) Few patients reported the importance of performing occupation, and they also insisted that they can't perform any work when they were hospitalized. They want to perform a few challenging tasks to compensate for the lag in occupation.
    
\section{DISCUSSION}
This review examined what patients at the palliative care at their end of life, thinks as most important for them. This review addresses the needs of patients at their end of life. The results highlighted the findings that every patient in palliative care wants to participate in all the activities and on occasions as life before the illness they met. The experience received from the patients was subjective, and it is influenced by the habit of the patient as well as individual ability \unskip~\citep{901159:20481252}. The exploration of the available evidence summarizes and identifies gaps in the literature, resulting in recommendations for future research. It seems necessary in future research to understand whether the impact of palliative care will alter the stress and anxiety of patients in palliative care 

It highlights the need for an occupational therapist for aiding patients at the end of life illness. Patients feel alive when they participated in one to one interview sessions \unskip~\citep{901159:20481263}. 

They felt motivated when they were surrounded by the people they love; this provides a sense of encouragement for the patients at the end of life illness. To motivate and create a sense of wellbeing for the patients at the end of life illness, an occupational therapist was the best choice. 

They are the excellent contributors as they have in considerable knowledge in palliative care, and they understand the needs and beliefs of the patients. They understand the ethics and values of patients at the end of life illness and maintain it with dignity and loyalty.
    
\section{Conclusion }
The study concludes that continued occupational therapy is important for everybody in palliative care. Occupational therapist modifies the perception of patients as they think that loss of independency gives a social death before the biological death strikes them. Thus occupational therapist enables patients to get involved and participated in all functions and to maintain self-esteem.
\section*{Acknowledgement}We thank the participants for sharing their experience and needs.

\textbf{Funding Support}

The authors declare that they have no funding support for this study.

\textbf{Conflict of Interest}

The authors declare that they have no conflict of interest for this study.
    

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