Empowerment of informal carers in online health communities - Enablers and inhibitors

This article discusses the impact of online health communities on patient empowerment and the emergence of functional and dysfunctional empowerment. It also explores the positive and negative aspects of online health communities and their role in the relationship between patient and physician.

Empowerment of
informal carers in
online health
communities

Table of Contents
INTRODUCTION...........................................................................................................................1
LITERATURE REVIEW................................................................................................................1
Journal:1 Wiley online library................................................................................................1
Journal 2: Elsevier science direct...........................................................................................3
Journal 3: Journals of Medical Internet Research..................................................................5
Journal 4: AIS Electronic Library..........................................................................................7
Journal 5...........................................................................................................................................9
Needs and skills of informal caregivers to care for a dependent person: a cross-sectional study
................................................................................................................................................9
REFERENCES..............................................................................................................................13

INTRODUCTION
Online health communities are defined as the online portal, which plays an essential role in
developing the population's quality of health and quality of care. Various journals are used to
review, and a systematic literature review is formulated (Ma et al., 2017). While with this, a
hypothesis provides different aspect which is essential and provides because it deal with thematic
analysis where the determination of online health communities for the informal caregiver have
two salient theme which include sharing and receiving social support and self and moral
empowerment (Naderi, Kiani, Madani & Etminani 2020). The hypothesis is usually investigated
with the potential benefits based on the online health communities for the informal caregiver,
which is conducted with the systematic literature review.
LITERATURE REVIEW
Journal:1 Wiley online library
Journal name: “Online health communities, contributions to caregivers and resilience of older
adults”
According to the Mostafa Kalampour et. al., (2020) (05-December) While taking the brief
contrast of the hypothesis, various positive aspects are considered in the online health
communities. With this, the despite negative social perception of aging. Most of the older adults
are having a good life based on health, and with this, they take little care of their health (H2d). In
this, there are some of the prevalence associated with the multi-morbidity, which help to play
significant enhancement with the age and losing of activity and function related with older
adults, which used to show the outcome of demise activity of physical and mental health.
Moreover, aging has been usually associated with various challenges, including social isolation,
which also provides results to access by the fewer resource and declining which help to create
resilience and wellness in the process back from the diversity, which is mainly considered an
essential aspect for the wellbeing. In contrast, stability is usually shaped by socioeconomic,
psychosocial, social support, and cultural circumstance. Several protective factors show the
internal attributes such as self-esteem, self-efficacy, and some of the external sources, including
social support, financial support and economical care. (H1 and H2a). Emotional contagion is also
empowering due to the online health communities because it acts as proposition which is positive
aspect for the online health advice.
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With this all, the Atae Rezaei Aghdam et. al., (2020) indicates the informal caregiver that
helps improve older adults' resilience and wellness. As per this, they also experience challenges
such as factors related to the emotional matter. With this, other challenges include interpersonal
relationships and various sets of barriers for care and support. It is usually creating a negative
impact on the pattern of daily life and shows the aspect of resilience, including informal
caregivers and older adults. Social network fatigue is also act as inhibitor for the people and also
for the online health communities which may be associated with negative factor. In this, the
informal caregiver who usually dedicates 20 hours and more per work to caregiving offer can
negatively impact people's financial condition and reduce the working hours that play significant
or even leave their job (H4b). In this, the caregiver exhibits a higher risk of health problems than
the non-caregiver which is also the relevance that provides care that negatively impacts physical
and mental health. Considering the services based on provision and option available for the
treatment option show the impact on positive and negative that is associated with the provided
hypothesis.
Moreover, in this way, it is effectively helping to deliver a kind of patient-oriented health
social work and network through the online health communities (H4c). In this, by eradicating the
geographical barrier, show the approach to provide the enable caregiver and people with a
similar health situation that is connected and share the much possible experience and information
that relatively offers emotional support to each other. The main reason that plays an essential role
in joining online health communities is achieving social support. Social support refers to the kind
of perception or the experience of love and cares presented by others, esteemed and providing
value that works as the social network or mutual assistance and obligation. In this, the provision
of the social support is used to render with the four factors: situation, the stress in nature, coping
and personal resources, relationship factor, and motivation of the proper support provider. It
helps to improve the social support and show the positive impact towards the mental and
physical health of the individual (H2f and H2c). The experiential expertise is helpful in the
online health communities where it acts as proposition and it play key role to empower the online
health communities as an enabler.
According to the Amina Tariq et. al., (2020) In order to formulate new insight into the
research question, there are various study which is conducted with the help of systematic
literature review which have optimistic potential to show the benefits of online health
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communities for the informal caregiver and with this it also provide the aspect of resilience
among population. Whereas, the empowerment of social support and self-disclosure is
established which allow for the age, gender and people form the different set of communities and
social group (H4b and H4c). This journal used to provide three contributions which is mentioned
above which include informal caregiver, explore relationship between those potential benefits
with the aspect of resilience. In this, make a proper integration then it is analysing that the online
health communities, health and gerontology is help to develop better understand towards the
potential of online health communities for the informal caregiver (H2c, H4c and H1). However,
the potential of the online health communities is to empower the social support to the patient
who is dealing with mental health or any kind of issue and this aspect is work as enabler. In this,
Social support is also empowering when the online health communities are allowing and learn
abilities to meet new people then it act as core of enabler. Moreover, the online health
communities are usually contributing the wellbeing of informal caregiver and older adults by
enabling service provider in which they have abilities to adopt the service which is informed by
planning and design that is associated with service which meet the need of informal caregiver
and adults which is old in age. As per this, the online health communities empower some the
aspect experiential expertise, social support, self-disclosure, social overload and so on. This all is
usually counter by facilitator support for the empowerment of control factor (H1, H2a, H2b and
H2c). with this aspect, due the higher volume of empowerment which is occur by enabling the
service of online health among people, the Social overload is observed sometime which may
create overlap of wellness and resilience.
Journals source: https://onlinelibrary.wiley.com/doi/10.1111/hsc.13247
Journal 2: Elsevier science direct
Journal name: Perception of peer advice in online health communities: Access to lay expertise
According to the Jasmina Rueger et. al., (2020) (2-September) With this Journals, it is
well identified that the discussion is lapped with the people who readily seek health advice from
the online sources. Social network fatigue and Emotional contagion is observed when the over
use and empowerment is advice with the perception of online health communities which act as
proposition. Moreover, there are number of people who must carry the value and advice which is
associated with others who have similar predominant behaviour which is related with the health
interest. As per this, the people also value advice which is based on knowledge with is regards
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with others. Moreover, the people also value speed of access to their peer expertise (H2a). In
this, the rapid use of internet allows people or patient to gain information with the wide range of
health issue and online health communities have access with source of information and they
allow to reassurance for many several type of patient. Moreover, they also offer emotional
support and they used to foster patient autonomy by showing the information that is provided by
clinicians. Much of the advice has been concern regard with the struggle with day-to-day by
patient and they deal with the condition of sometime. However, there are various aspect of
feeling which is usually informed and learning which about coping with the based on strategies
that improve the patient which used to perceived the control and ability that they have ability to
manage the implication of daily life (H4f and H3g).
According to the Seymour and Lupton, it also evaluated with the base of convenience and
accessibility with the online health communities which used to expand on the aspect of
traditional support group. With this all, the people with the deep knowledge of online health
communities they are truly participating to create awareness and develop quality of health with
the based on online, then, Self-disclosure is empowering due this that act like enabler. As per
this, they are especially taken with those who is living with the chronic or disabling situation
which help to fit their online information that seek it more flexibly around the constraint posed
by their various form of illness. In this, the online social networking has an ability which allow
patient to make interaction which is diverse with different dispersed group of patient than those
who is taking possible offline. In the case of critical condition or the rare illness, the online
health communities have only source to connect and show the viable mean of disperse patient to
connect and share their contributed experience with the peers. As per this, if the any individual
does not have offline experience, patient which help to feel more supported and full of care with
less impact of alone. In this, they are always connected with the distant other with the face of
similar situation which is making and creating impact (H2c and H2a).
According to the Hawn, the online health communities play important role in providing
online health to number of people with this compatible mode. With this online mode. The
substantial increase in the use of social media in the healthcare. In this, there are variety of
studies and research were taken in order to establish with patient which help to appreciate social
media for the information and emotional support, this help patient to take a support with their all
aspect which is productive and vital with their health. The online health service allow patient to
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take good access of health related advice with instant and convenient manner. In this, the internet
based application is helpful to contribute the empowerment of patient. With this all, it helps to
acquire the knowledge about their condition and various treatment option, this may be helpful
and feel more prepared for the factor consultation with the help of medical professionals.
According to the Lee and Wu, online information may helpful to reduce the information gap
which is originated between the healthcare professional and patient. This is also challenging for
the healthcare expertise. The online advice may be or may not be helpful either healthcare
professional may deal with patient regards with the better informed than before may be an
unnecessary information. In order to provide quality of health information, it take longer time to
find someone in online portal and they ultimately it create negative impact on patient and
healthcare professional (H2f). Whereas, this finding and taking the appropriate address in the
online portal may create consequence with the number of patient in aspect to waiting. Moreover,
these adverse reaction is usually crate negative aspect among the patient to feel low empowered
and they continue to search for the health information which is based on online. Hence, instead
of all their parent also try to become involved with the decision making, healthcare professional
which help to reflect on the both the advantage the adverse effect and potentially harmful effect
of the growing use of social media that is for health related reasons. This journal has enormous
aspect in term of online health communities that provide an advice to people appreciate and
which is more beneficial for the healthcare professional for the policy makers as well as for the
patient. Moreover, the healthcare professional has aspect which is helpful to understand the basis
of engagement with patient who usually know the aspect of information and it is render by other.
They all are work as the enabler in the online health communities and who have negative aspect
for the online health communities which include time taking factor work as inhibitor who believe
that the physical appearance is much more important in order to get health services (H4e).
Journal source: https://www.sciencedirect.com/science/article/pii/S0277953620303361
Journal 3: Journals of Medical Internet Research
Journals name: Impact of Social Processes in Online Health Communities on Patient
Empowerment in Relationship with the Physician: Emergence of Functional and Dysfunctional
Empowerment
According to the Gregor petric et. al., (2017) online health communities is one of most vital
health internet application which help to make transition in the process of transformation from
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the previous centred relationship to the patient centred relationship. In this, the process is usually
hailed with some of the origin which is empowered patient. The hypothesis which is based on
various proposition allow them to understand that the online health communities enable social
support allow people to take their own self disclosure. In the online health communities include
such as Likeme, WebMD and PubMed are the social environment that help to provide health
information than the search engine. In the online health allow to number of service user that they
can share their experience which is related with health, in this, they also share the exchange of
social support, compare the relevant information which is based on the health issue, find
meaning and the discussion with online health professional which is helpful and provide the
health consultation and the clinical expertise with the base of online healthcare professional who
used to provide health advice to the number of people and clinical expertise to the user. In online
health communities, user can engage in the physician that based on activities that include reading
post and asking question.
In this, there are some of association which is based among the exchanging social support,
comparing with others, sharing and taking the experience and expressing greater confidence in
the role of relationship with the healthcare professional. From some of the study, it is also
analysing that the 60 percent of active user state that their use of online health communities
affected their relationship with their healthcare professional. In this, the above mentioned study
which help to provide the valuable information regarding the cause of online health communities
on the patient is help to empower in the relationship with the aspect of physician. This is also
known as some able factor which show problematic facet of patient empowerment in online
health communities which is associated with the patient relationship which is developed between
the physician. The social overload and emotional contagious is happen when the over use or the
excessive factor of online health communities were taken. In this, the concept which is need to
be expanded with the more systematic and through observation of the positive and negative
aspect which is expanded with participation, control confidence, efficacy and patient skill in this
relationship. In addition, with this all following factor are taking into the account in the scope of
concept such as patient empowerment that does not require lead for the better communication
with help of physician and healthcare professional. It has some of the limitation which is
unproductive and relationship which used to create negative encounter and non-adherence that
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may include several conflict and can start with the manipulation or with the revenge (H1 and
H2e).
According to the Tanja Kamin, the PERP is defined as the form of communication and set of
behaviour which is play key role for determinant of relationship with the core of physician and
high quality healthcare. With this all, the interactive and communicative behaviour do not
provide same aspect which is related with the positive and productive for the relationship. Due
the error and sometime in the case of emergency, there is no need to take the service from the
online mode as per this, they need offline service in order to understand the consequence and
provide effective treatment (H2a, H4a and H1). Moreover, this behaviour often taking change
based on power with position and associated process which can lead to result in formulation of
conflict which is develop between patient and their healthcare professional. The outcome which
is obtained from the result in patient-healthcare relationship is disturbed, where the patient
become provoking and taking the stance in such a way which is aggressive towards the
healthcare professional. There are some of the recommendation on the basis of hypothesis which
is taking into the account while taking the contrast of enabler. It is important to build effective
communication channel without long waiting time. In this, they must focus on patient while
listening their complication and provide suggestion and recommendation with the help of online
application, as per this the main aim of this online health communities is to taking care of those
patient who need recommendation for their common issue which is related with health such as
hypertension, diabetes and many more (H1).
According to the viewpoint of Sara Atanasova et. al., (2017) the main purpose of this journal
is to provide the information which show that the social process where patient is involved in the
online health communities. The controlled behaviour of support facilitator towards the online
health communities have various enabler which include social support and so on. This include
exchanging of information with the other user and healthcare professional used to provide social
support, finding meaning and recognition and so on. in addition, it is associated with the patient
functional and dysfunctional PERP. As per this, a wide aspect of investigation is being taken
with the association that have dominant factor of the patient-physician relationship which include
healthcare professional or the physician have their own willingness to provide paternalistic role
and the level of online health literacy, which show that there are number of patient which
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empower and show reduce the conflict with healthcare professional. As per this the journal have
both enabler and inhibitor which is determined while studying (H2d).
Journal source: https://www.jmir.org/2017/3/e74/
Journal 4: AIS Electronic Library
Journal Name: A conceptual framework of Digital Empowerment of informal carers: an expert
elicitation study
According to the author Tsholofelo Sethibe et. al., (2019) the use of the online wellness
communities confirms that the online social support for ill people as well as their families can be
specifically an important factor to their health care which can also allow the people for self-care.
In this particular environment, more people can take part in expanded and the varied networks as
this permits more enriching interactions than getting one person's opinion. As this type of
intercommunication may be anonymous which enables people to participate more freely. In this,
they can provide more social support which is generally different from the offline point of views
and an individual can interchange the knowledge or information at their convenient time period.
The people who are using the online health communities including the families as well as the
friends of the care receiver who can volunteer their work which take part in care and such
services are known as the informal carers (H2b). This basically results in various informal carers
which use the online health communities in order to find the social support and gather all the
information or knowledge they may require to handle the burden of carer. Necessarily, the
enhanced level of the stress can reduce the ability of making decisions and self-efficacy.
Moreover, this journal article investigates that how the use of online communities can allow the
empowerment of the informal carers to overcome the strain as well as enhance the capacity to
make decisions. These capabilities are quite important to an informal carer because it helps in
making decisions regarding personal and healthcare related which is basically a part of an
individual's daily routine and the care takers.
The online wellness service providers act as a support intervention which enables peer to
peer interconnection that allows people to interchange their experiences which are quite personal.
As the interchanging of these basic experiences gives knowledge or understanding and
encourage which a healthcare provider specifically does not contains. In this the social support
consists the meaning in which the social relationships encourage the health which is physical
functioning and the psychosocial wellbeing (H2b). This research approach confirms that the
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social encouragement makes a positive impact in people's day to day life which involves the
development in health, decreasing the strain and moreover enhancing the public health.
However, the following literature acknowledges that the online service providers provides an
essential therapeutic components of the social encouragement, as this allows the public to
provide as well as receive the support that basically enhance the feelings of helpfulness and a
sense of environment that may support the positivity and encourage empowerment in informal
carers. According to the author, every community which is online requires to have fresh content
as well as the time bounded interactions that are necessary for survival. These can be achieved by
the active involvement of the public. Furthermore, unlike the other communities, the online
service providers include about 90% of the inactive people, 9% of the people are contributory
and remaining the 1% people contributes the most, the author mention the 1% rule. This research
study confirms that the 1% people make contributes approximately more than 70% of the whole
content. As these are kind off the most serving people of the community and their continuous
involvement bring out a genuine aid to assist other people. In addition to this, such people may
experience fatigue, which is basically a concept of social overload (H2d, H2f) as their outcomes
may results in barrier to contribute all together which is generally producing or consuming the
data to an online wellness service. As their non-usage may directly impact negative which affects
the social support, information exchanging, consequently suppressing the empowerment.
Through this research it is determined that the author conducted an interview and through
this it is analysed that the informal carers create as well as interchange knowledge in the online
health service and their result are about 100% sensible (H2a). According to the author, the
interchange of the experiential cognition act as justified variable when it comes under the
consideration of the online interconnection with respect to empowerment. It is because mostly
carers which are connect better to personal stories rather than the supposed cognition. Another
factors which make impact over public health is an emotional support. In this, carers turn people
for combination and stressful times which leads to feeling of being cared for. From the above
discussion, the care providers often feel exhausted when they generally tend to spend their
emotional energy into the taking care, although they are not aware about the kind of running out
of the emotional support for themselves as well as they require some of the care for them also
(H2e). So, when public require some emotional support, they immediately turn to the forum. If
the forum is anonymous, then it is legal for them to feel stressed or upset or people may know
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about it because the care provider on every level it may be really easy to feel like people
generally have no rights to feel emphasized. In another way, the forum also gives the area to
listen and not specifically offer any sort of proposal so letting people know that other people are
listening is essential as well. Encourage people's self-esteem by providing the people responses
on what they manage to do for example managing their stress.
This whole Journal research speaks the enablers as well as inhibitors of the online health service
provides which empowers the public in a positively and negatively manner. As it provides a safe
surroundings, facilitates the discussion, may promote the self-care and the online health
communities indirectly provides a good mental health to the people. With this, it is concluded
that these such factors of the online health service providers may contribute positively as well as
negatively make impact over public health somewhere.
Journal source: https://core.ac.uk/download/pdf/326833262.pdf
Journal 5
Needs and skills of informal caregivers to care for a dependent person: a cross-sectional study
Maria dos Anjos Coelho Rodrigues Dixe, Liliana Fernanda da Conceição Teixeira, Timóteo João
Teixeira Camacho Coelho Areosa, Roberta Caçador Frontini, Teresa de Jesus Almeida Peralta &
Ana Isabel Fernandes Querido
Online communities for patients with chronic conditions are becoming healthcare providers. It is
seen that support and services are offered and they are becoming a collective oppositional force.
There are several communities as well as collective partners which have empowered practices
within healthcare professionals. Online resources are used for analysing how people manage
health care processes. There are several patients who seek information regarding potential health
conditions, support and guidance in treatment. Online communities have the potential for
contributing quality of care by enhancing empowerment of patient. There is gap in research
associated with the way in which online community are contributing empowerment of patient. It
is required for professional practise in regards to empowerment. In context of patient
empowerment search string, it is evaluated that the members or patients have to be so effective
that they get good services.
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Within today’s world, there are several socio-demographic changes that have occurred like
average life expectancy and presence of non-communicable and chronic diseases. This leads with
an enhancement of dependency on others. There is demand for informal caregivers which is
having significance increase within past years. It is seen that caring for the development of
person is associated with the burden series and it leads to psychological, physical and emotional
challenges (H2,H4). In regards to the difficulties faced by informal caregivers. This is helpful for
learning about different areas which are faced by informal caregivers. This provides explanation
about needs and guidance for relieving from burden. As population of world is increasing, it is
seen that average life expectancy of the population as well as presence of chronic and non-
communicable diseases. As per the viewpoint of Orem, it is analysed that some universal self-
care requirements must be present for the areas of evaluation within dependent person. This
consists of maintenance of sufficient amount of air, intake of food and water, balance between
solitude as well as social interaction. The family caregivers are involved in reporting insufficient
preparation for an adequate continuity for care. It has been interpreted by research that
responsibilities are impose by caregiving situations which can interrupt any one’s personal areas.
Informal caregivers are involved in usually concerning about difficulties which are faced by
hospitalisation of dependent person. These individuals have to report for the need of information
associated with different areas including monitoring, management, personal care delivery,
handling emotional distress and care skills. As caregivers are representing an important part of
network, there is necessity for supporting caregivers in developing and managing difficulties
with care network. The quality of care which is provided to people has to meet standards. It is
very essential for understanding the resources which caregivers are using for minimising the
emotional and physical burden which they are facing. There are health professionals which are
using information for providing better care plans. This consists of promoting wellbeing of
caregivers and providing them with useful information. There are few problems which are faced
by caregiver at home. This causes major cause of readmission regarding dependent person. There
is need of understanding main difficulties which caregivers are facing at the time of provision. It
is also considered that impact of caregiving on a dependent person. After analysing this study, it
is evaluated that there is need for analysing skills and needs of informal caregivers for dependent
person.
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As the development of past decade, it has been seen that there is substantial increase in the usage
of social media within healthcare. An online information can minimise information gap between
clinician as well as patient. This is perceived that it is challenging for doctor’s expertise. There is
need for addressing as well as filtering information that a patient is using for managing the
clinicians. There are various concerns regarding danger of incorrect diagnosis as well as
misinformation. It is essential that circumstances must be managed within online community for
enhancing the work efficiency. Communication technologies like personal online health
communities have been increasing as a tool for realising empowerment of patients. There are
changing implicit for norms within online communities as well as societal context. There are
various possibilities which are involved within changing the norms and opening dialogue
between patient and healthcare professionals regarding expectation. There is growth among use
of online health communities. The online social support for families and patients is known as an
essential approach for healthcare. There are online communities which provide social support in
such a way that it is different from various offline approaches. In context of the result of this
research, it is seen that social support and gathering is needed for tackling burden. It is stated that
there is need for support approach as well as empowerment which is preventive. It is used for
attracting and making several choices needed for increasing the capacity of individuals. This is
used for making choices and reaching desired outcomes and actions. There is need for
maximising the online community and patient engagement which are used for analysing separate
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process. The role of online community support in association with patient activation is needed
for creating independence and this is represented as patients who are taking part in narratives of
patients. The patient involvement is associated with involvement of advanced phases of patient
engagement. There is collaborative efficiency that determines the ability for health care providers
to give effective care. The analysis of patient involvement and participation within outcome of
online community is considered to be one of the best for initiation of processes.
Online Journal source -
https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-019-1274-0
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