Understanding what it means to be socially included for people with a lived experience of mental illness

Abstract

Aims:

Social inclusion is increasingly understood to have positive and beneficial implications for the mental health outcomes of people with severe mental illness. The concept is plagued by definitional inconsistencies and a lack of consensus regarding what it means to be socially included, in particular for groups most vulnerable to social exclusion, such as people with mental illness. The aim of this study was to obtain a consensus regarding the key contributors to social inclusion from the perspective of people with and without a lived experience of mental illness (consumers of mental health services, carers, and general community members).

Methods:

Delphi methodology was employed to reach consensus agreement. The Delphi questionnaire was based on a previous review of the literature and consisted of 147 items categorized into 13 domains. It was presented to participants over three rounds. Participants (N = 104) were recruited into three groups (32 consumers, 32 carers of people with a mental illness, and 40 members of the general community – neither consumers nor carers). Retention of participants from Round 1 to Round 3 was 79.8%.

Results:

Similarities and differences were observed between the groups. A number of items were very strongly endorsed as key contributors to social inclusion, relating to social participation, social supports, housing, neighbourhood, community involvement, employment and education, health and well-being and service utilization.

Conclusion:

Findings supported previous work, indicating the importance of having a strong sense of connection with others as well as the importance of safe and stable housing, support services and personal motivation and hope. We obtained a well-rounded perspective among groups regarding the key contributors to social inclusion, with a particular relevance to people living with mental illness. This perspective has significant clinical and research utility.

Keywords

social inclusion social exclusion Delphi methodology consumer participation

Social inclusion entails a sense of connection to family and friends, the community, and possessing the means and opportunity to participate in social and civic activities. People with mental illness are among the most socially excluded (Dunn, 1999; Harrison & Sellers, 2008; Lloyd, Waghorn, Best, & Gemmell, 2008), commonly experiencing greater and multiple forms of disadvantage than others in the general community (Huxley & Thornicroft, 2003). This includes: higher rates of unemployment (>85%) (Evans & Repper, 2000; Shepherd & Parsonage, 2011); increased risks of homelessness (Craig & Timms, 2000; V. A. Morgan et al., 2011) and dependence on government assistance (85% for people with psychosis; V. A. Morgan et al., 2011).

The concept of social inclusion is plagued by definitional inconsistencies and a lack of consensus regarding what it means to be socially included (Huxley et al., 2012; C. Morgan, Burns, Fitzpatrick, Pinfold, & Priebe, 2007; Vinson, 2009). An increased sense of optimism exists regarding the opportunity for improved outcomes for people with mental illness by enhancing social inclusion (Dunstan, Falconer, & Price, 2017; Fenton et al., 2017). Improvements in areas related to social inclusion are associated with better mental health outcomes. For example, social supports and structures have assisted those suffering from mental health conditions to significantly reduce both symptoms of illness and relapse rates (Psychiatric Disability Services of Victoria, 2008). Similarly, gainful employment has also resulted in increased social inclusion and quality of life (Psychiatric Disability Services of Victoria, 2008).

The ability to effectively improve social inclusion depends heavily on understanding clearly what social inclusion means, what factors contribute to social inclusion and what it means to be socially included. Previous research by Filia, Jackson, Cotton, Gardner, and Killackey (2018) involved a thematic analysis of social inclusion literature (peer-reviewed and grey) with an emphasis on mental illness. A list of specific contributors to social inclusion and social exclusion (in the sense of them being two ends of a fluid continuum) was developed based on professionals’ perspectives, compiled to address the need for more specific data breakdowns for indicators (Social Inclusion Unit, Department of the Prime Minister and Cabinet, & Australian Social Inclusion Board, 2008). Social inclusion was found to be a multi-faceted and complex concept, with a range of inter-related and dynamic contributors. These contributors were strongly related to social relationships, participation in social and occupational activities, housing, and to a lesser but still important extent, health and well-being, access and utilization of services, and involvement in wider communities.

There is no agreement that these aspects capture the meaning of social inclusion for different populations. Most definitions of social inclusion imply a sense of relativity, stating that social inclusion involves participation in ‘normal relationships and activities’ (Levitas et al., 2007, p. 9) or in ‘key activities of the society in which he or she lives’ (Burchardt, Le Grand, & Piachaud, 2002, p. 30); or is about how a person may ‘connect with family, friends’ (Social Inclusion Unit, Department of the Prime Minister and Cabinet, & Australian Social Inclusion Board, 2008, p. 8), in ‘ways that matter for well-being’ (Boushey, Fremstad, Gragg, & Waller, 2007, p. 4).

Perception of individual circumstances is influenced by what a person sees around them and what they think of their own circumstances in relation to others (Vinson, 2009). The relativity of social inclusion is no more apparent than when considering the term as applied to marginalized groups. Such groups have reduced opportunities to engage or participate in social and civic life, often with additional circumstances further exacerbating their vulnerability to social exclusion. Therefore, when considering what social inclusion entails, relevance is required when applying it to specific groups because, as with individuals, the specific needs of each group, and what is perceived as important, necessary or able, for one group, may differ for another.

People with mental illness face additional challenges to achieve social inclusion. With a cyclical pattern of health issues and factors that contribute to social exclusion, commonly prized elements of social inclusion may hold less value. For example, where employment is considered essential to social inclusion, part-time employment may be preferred over full-time; or more emphasis may be placed on any housing rather than preferred housing. Given the episodic nature of mental illness, perceptions of social inclusion and an individual’s desire to be socially included may fluctuate with time and circumstances.

Perceptions of social inclusion may also vary between groups of individuals impacted by mental illness, such as people with mental illness themselves, their carers, family members, and friends. It would be of interest to identify similarities and differences regarding how social inclusion is perceived by these groups, as the information would be beneficial when working collaboratively.

The focus of this study was to develop a consensus regarding key features of social inclusion for people with a lived experience of mental illness. There were three specific aims: (1) to determine the face validity of an existing list of items pertaining to social inclusion compiled following thematic analysis of a wide range of literature (Filia et al., 2018); (2) to conduct a Delphi study to obtain consensus of the key features of social inclusion among broader stake holders (consumers of mental health services, carers of people with mental health conditions, and community members); and (3) to compare perspectives of social inclusion in consumers, carers, and community members.

We anticipated that the results of the Delphi study would demonstrate differences between the three groups regarding items endorsed as important for social inclusion. For example, it was expected that community members might identify items such as full-time employment and earning an income as important contributors to social inclusion, whereas consumers and carers might not. Likewise, consumers and/or carers might identify items such as living in public housing or managing money independently as important contributors to good social inclusion, whereas community members may not identify the helpfulness or importance of these items.

Methods

Design

The Delphi method is a systematic technique used to establish consensus among groups of experts on a particular topic–expertise determined by specialized knowledge or lived experience (Jeffery, Ley, Brennan, & MacLaren, 2000; Mead & Moseley, 2001). It is a multi-stage approach; each stage builds on the results of the previous one, culminating in a final set of responses agreed upon by majority of participants in each group (McKenna, 1994).

A number of ‘rounds’ are completed in a Delphi study. During each round, items are presented to panel members, with each panel representing a group of experts in their own right. Panel members are asked to rank or rate each item. With each round, items meet pre-determined criteria for ‘endorsement’, ‘re-rating’ or ‘neither’. As rounds progress, items decrease and opinions converge until consensus is reached (Murry & Hammons, 1995).

The Delphi method provides flexibility and the ability to achieve consensus while obtaining individual opinions through group data. It has been used to good effect in previous mental health research (Kelly, Jorm, & Kitchener, 2009; Kingston et al., 2009; National Public Health Partnership, 2000).

Participants

Participants were recruited into one of three groups: (1) consumers of mental health services; (2) carers of people with a mental illness; and (3) members of the general community (neither consumers nor carers). Strategies employed to recruit participants included presentations at area mental health services and psychiatric disability support services, phone calls to and advertisements at such services, and once the study was underway, referrals from existing participants.

Initially, consumers and carers were identified and recruited through their roles as paid or unpaid advocates at Area Mental Health Services and Psychiatric Disability Rehabilitation and Support Services within the state of Victoria, Australia. This was later extended to consumers and carers in general. These efforts were made (to recruit people specifically within the roles of consumer and carer advocates), as it was anticipated that they would provide well-rounded views, considering those of the people they advocate for.

Despite 10–15 participants per group considered ample for the Delphi technique (Hasson, Keeney, & McKenna, 2000; Hsu & Sandford, 2007), a minimum of 30 per group was sought due to high attrition rates seen in numerous studies (Hart, Jorm, Kanowski, Kelly, & Langlands, 2009; Jeffery et al., 2000; Kelly et al., 2009; Kingston et al., 2009; Langlands, Jorm, Kelly, & Kitchener, 2008; National Public Health Partnership, 2000). A priori power calculations also indicated that ⩾30 participants in each group would provide sufficient power (1–β = .80) to reliably detect group differences between three groups, with a large effect size and α = .05 (Cohen, 1992).

Delphi questionnaire

The initial Delphi questionnaire was based on the results of the thematic analysis detailed in Filia et al. (2018). It comprised 147 items categorized into 13 domains. Several iterations were reviewed by a group of advisors (n = 3), and the questionnaire piloted on a small number of people (n = 5), with feedback incorporated into a final version. The questionnaire was divided into 11 sections each including multiple questions, with an explanation of its relevance to social inclusion. Participants were asked to rate whether they believed items were important to being socially included, contributed to good social inclusion, likely to contribute to or negatively impact upon a person’s ability to be socially included, and whether they believed that certain items would limit a person’s ability to be socially included. Additional questions were included to elicit more detailed information from participants, ensuring all possible contributors to social inclusion were identified.

Basic demographics were obtained: age, gender, diagnosis and length of time since diagnosis (of self, or person caring for); and for carers, age and relationship of the person caring for (e.g., son, spouse and sibling).

Procedure

Ethics approval was granted by Melbourne Health Human Research and Ethics Committee (HREC 2010.105). Participants were offered the option of completing the Delphi questionnaire via the mail, online using the survey platform surveymonkey.com, over the phone or face-to-face.

Three rounds of the Delphi questionnaire were completed. As per Delphi methodology (Jorm, 2015), participants received a copy of group results alongside individualized summary reports following each round. These included group responses to items due for re-rating alongside personal responses for Rounds 1 and 2, and a summary of results for each item following Round 3.

Data analysis

Participants were characterized at the initial round using descriptive statistics (means, standard deviations, percentages and counts). Comparisons between groups regarding demographic characteristics were conducted using chi-square (χ²) analyses and one-way analyses of variance (ANOVA) with Tukey’s honestly significant difference (HSD) test post hoc comparisons.

Delphi study data

Items on the Delphi questionnaire were assessed after each round to see whether they were to be ‘Endorsed’, ‘Not Endorsed’ or ‘Re-Rated’. Overall domains of social inclusion were rated on a 4-point scale from 1 = not important to 4 = essential. Remaining items were rated on 3-point scales, providing a mid-point for analysis; responses ranged from 1 = not important to 3 = extremely important, 1 = not likely to 3 = very likely and for items that might limit a person’s ability to achieve good social inclusion, 1 = would not limit to 3 = definitely limit. Initially, it was anticipated that items would be assessed using the highest rating from each scale. However following analysis of findings after the first round, so very few items reached endorsement (4.8%, n = 7) and only 14.3% met criteria for re-rating (n = 21). At this time, it became apparent that our method of scoring items was flawed and that we had neglected to include a neutral mid-point. A decision was made to combine the two highest (or positive) responses to reflect a dichotomous rating system. Items were now essentially rated as ‘important/not important’, ‘essential/not essential’, ‘would not limit/would definitely limit’.

Endorsed items

An item was considered ‘endorsed’ when ⩾80% of participants in each group rated the item as particularly important, likely to contribute to, or limiting to being socially included.

Items for re-rating

Items that received ratings of ⩾80% of one group, or ⩾70%–79% of two groups were included in subsequent rounds for re-rating.

Remaining items

Items that did not meet either criterion were not included in the subsequent round.

Chi-square (χ²) tests for independence were conducted to identify differences between groups regarding Delphi data. The value for Fisher’s Exact Probability Test (FET) was used where >80% of cells had expected frequencies of <5. Post hoc analyses focused on adjusted residuals (z) for each cell to determine which groups differed.

Statistical analyses were conducted using IBM^® SPSS^®, version 20.0.

Results

Participants

In total, 104 participants were recruited. Table 1 shows number of participants recruited using each approach. The Delphi questionnaire was provided to participants via surveymonkey.com (n = 102) or in the mail (n = 2).

Table 1.

Number of participants approached using each recruitment strategy.

Recruitment strategy	Consumers	Carers	Community members
Phone calls to AMHS and PDRSS	23	24	–
Presentations and advertisements	10	1	1
Emails and phone calls	–	–	18
Referrals from existing participants	9	11	22
Totals	42	36	41

AMHS: Area Mental Health Service; PDRSS: Psychiatric Disability.

Rehabilitation and support service

In Round 1, 32 consumers, 32 carers and 40 community members participated (see Table 2). In Round 2, 91 participants participated and in Round 3, 83 participants participated. Groups were made up of 30%–31% consumers, 30%–31% carers and 38%–40% community members in each round. Retention was high between Rounds 1 and 2 (87.5%); from Round 1 to Round 3 retention was 79.8%.

Table 2.

Demographic characteristics of participants in Delphi study.

Variable	Consumers	Carers	Community	Test statistic	p-value
Total number of participants, % (n)
Round 1 (Total n = 104)	30.8 (32)	30.8 (32)	38.5 (40)
Round 2 (Total n = 91)	30.8 (28)	30.8 (28)	38.5 (35)	–	–
Round 3 (Total n = 83)	30.1 (25)	30.1 (25)	39.8 (33)
Gender: % (n)	37.5% male (12); 62.5% female (20)	15.6% male (5); 84.4% female (27)	35.0% male (14); 65.0% female (26)	χ² = 4.50	.106
Age, years: M (SD), Range	40.73 (11.60) (22–81)	53.66 (10.64) (33–79)	41.50 (14.52) (21–71)	F = 10.06	.001
Skewness (SE)Kurtosis (SE)	1.20 (.43)3.90 (.83)	.05 (.43).16 (.85)	.55 (.37)–1.01 (.73)
Diagnosis (%) of consumers and those the carers care for
Depression	10 (31.3)	5 (15.6)
Bipolar disorder	7 (21.8)	7 (21.9)
Schizoaffective disorder	5 (15.6)	3 (9.4)
Schizophrenia	3 (9.4)	2 (6.3)
Psychotic illness not otherwise specified	3 (9.4)	–
First episode psychosis	–	1 (3.1)
Personality disorder	–	1 (3.1)
Anxiety disorder	–	1 (3.1)
Autism spectrum disorder	–	2 (6.3)
Dementia	–	2 (6.3)
Anorexia nervosa	1 (3.1)	–
Mental Illness due to Physical Conditions	–	3 (9.4)
Unspecified	3 (9.4)	5 (15.6)	–	–	–

SD: standard deviation; SE: standard error.

Group differences were noted with respect to age; carers were significantly older than community members (p = .001) and consumers (p = .001). Gender was evenly distributed across groups (see Table 2).

Most consumers reported a diagnosis of affective disorders (68.7%, n = 22): Major Depressive Disorder, Bipolar Disorder and Schizoaffective Disorder. Carers were similarly more likely to care for those with affective disorders.

Carers reported caring mostly for their children (46.88%, n = 15) or spouse (18.75%, n = 6). They also reported caring for in-laws (9.4%, n = 3), parents (6.25%, n = 2) and other friends and relatives (18.75%, n = 6).

Delphi results

The final outcome for each item is detailed in Table 3. Round-by-round details for each item are available upon request.

Table 3.

List of items included in Delphi study and final outcome for each.

Domain/item	Final result
Overall domains
Taking part in social activities, having good social networks (friends and family)	Endorsed
Being employed or studying	Not endorsed
Living in stable, comfortable and affordable housing. Living in a safe neighbourhood	Endorsed
Having access to services such as shops, doctors, leisure facilities, transport and the Internet	Endorsed
Being in good health, with little impairment due to mental or physical health concerns	Not endorsed
Having an income, receiving enough money to afford life’s basic necessities: gas, water, electricity, heating, clothes and phone	Endorsed
Living in circumstances where stigma or discrimination does not exist	Not endorsed
Having opportunities to take part in everyday life, that is, the normal social and cultural activities that are common to a person’s community	Endorsed
Good individual circumstances such as motivation to improve own circumstances; having had a happy upbringing in a house free from poverty. Being surrounded by examples of good social norms	Not endorsed
Civic participation, taking part in activities that share your voice as part of a community. For example, voting, taking part in local community meetings, volunteering in local charities, events	Not endorsed
Leading a life free from illegal activity such as violence, drug use, theft or other crime	Not endorsed
Social resources
Sharing everyday activities with others such as watching television together	Endorsed
Sharing meals with others	Endorsed
Talking to a family member or friend daily on the telephone	Endorsed
Running errands or doing chores with others	Not endorsed
Living in a household with others	Not endorsed
Having regular contact with neighbours and others in the community, for example, chatting with the person at the post office, bank, local shops or other community service	Endorsed
Providing advice or support to a family member or a friend	Endorsed
Having someone to chat to about your daily activities or daily events	Endorsed
Having a group of friends among whom you share experiences, thoughts and feelings	Endorsed
Having a best friend with whom you share your thoughts and feelings	Endorsed
Good friends who you see or speak to regularly and can count on in a crisis	Endorsed
Friends with whom you share common interests and values	Endorsed
Friends with whom you enjoy sharing time and look forward to seeing	Endorsed
Friends who would call on you to discuss their everyday experiences	Endorsed
Friends who would call on you in a crisis	Endorsed
Someone who would call you their best friend	Endorsed
Lack of self-confidence or self-esteem	Endorsed
Feeling unwelcome, like you do not belong	Endorsed
Not having participated in any social or community activities in the past 12 months	Endorsed
Feeling excluded or ostracized from activities because you have not taken part in them previously (e.g., when joining a new group or club)	Endorsed
Not having established social networks to draw upon for social participation (i.e. not having anyone to do social activities with)	Endorsed
Not enjoying social activities (for example, because of social anxiety, being shy, not finding anyone who shares common beliefs or interests)	Endorsed
Labour market and education
Working full-time in paid employment	Not endorsed
Working part-time in paid employment	Endorsed
Doing voluntary work or work without pay	Endorsed
Being employed for 12 months or more	Not endorsed
Working in open employment (in mainstream employment alongside people with or without disabilities)	Endorsed
Being enrolled in education that will lead to a qualification	Endorsed
Working in a chosen area of employment (that is, being employed in a role that the employee is suitably qualified for and interested in)	Endorsed
Friendly working environment	Endorsed
Good working conditions (pay appropriate to the role, leave entitlements, free from bullying or harassment)	Endorsed
Unemployment	Endorsed
Long-term unemployment	Endorsed
Irregular or under-employment (working less hours than would like to be)	Endorsed
Living in a jobless household (no adult member currently employed)	Endorsed
Being unable to get a job or keep one because of discrimination in the job market	Endorsed
Poor employment opportunities (for example, lack of availability and suitable roles)	Endorsed
Having a disability that is likely to impair ability to perform in occupational role or disrupt employment	Endorsed
Lacking skills or qualifications required for employment	Endorsed
No secondary school qualification	Endorsed
Did not complete primary school	Endorsed
No postsecondary qualifications	Not endorsed
Impairment or disability having caused disruption to educational achievement	Endorsed
Housing and neighbourhood
Homelessness	Endorsed
Living in transitional housing or in hostels	Endorsed
Unstable or unsuitable accommodation	Endorsed
Living in accommodation lacking basic necessities (e.g. heating, ventilation, access to utilities and not well-maintained)	Endorsed
Living in a location other than where would choose	Endorsed
Living in a poor or disadvantaged neighbourhood	Endorsed
Experience of neighbourhood crime and/or violence	Endorsed
Confinement due to fear of crime or personal attack	Endorsed
Own home and paying off a mortgage	Endorsed
Own home outright	Endorsed
Living in private rental	Endorsed
Living in rent-free circumstances (e.g. with parents or other family members)	Endorsed
Living independently (not in supported accommodation)	Endorsed
Dependent on or living in public housing	Not endorsed
Cost of housing more than 25 of income	Endorsed
Living alone	Not endorsed
Health and well-being
Being in poor health or having a disability (mental or physical)	Endorsed
Being unable to access services due to physical or mental health condition	Endorsed
Contact with psychiatric services	Not endorsed
Lengthy or repeated admissions to psychiatric services	Endorsed
Poor diet and lack of regular exercise	Endorsed
More focus on mental health to the detriment of physical health (perhaps inadvertently overlooking physical health concerns)	Endorsed
Not receiving regular check-ups for things such as dental care, skin checks or other preventive health measures	Endorsed
Economic
Receiving a government pension	Endorsed
Earning an income	Not endorsed
Earning an income high enough to cover basic costs	Not endorsed
Able to raise money from family or friends in case of an emergency	Endorsed
Able to raise money from sources other than family or friends in case of an emergency	Endorsed
Managing money independently	Endorsed
Sharing expenses with others (rent, food and bills)	Not endorsed
Ability to live life as desired (for example being able to afford to choose the services would like to use, interests or hobbies to take part in, housing in location of choice)	Not endorsed
No income	Endorsed
Low-income earners	Endorsed
Financial strain due to low income	Endorsed
Long-term poverty (having experienced financial hardship for longer than 5 years)	Endorsed
Poverty compared to others in community	Endorsed
Lack of savings for use in an emergency	Endorsed
Unable to keep up with paying the bills	Endorsed
Unable to afford insurance for house, contents and car	Endorsed
Unable to afford health insurance	Endorsed
Unable to afford a car	Endorsed
Having pawned belongings in the past 12 months to get by	Endorsed
Finding it difficult to provide for family (including children)	Endorsed
Unable to afford basic personal goods required for well-being (e.g. warm clothes, soap and toothpaste)	Not endorsed
Unable to afford basic household goods necessary for well-being (e.g. washing machine, fridge, microwave and bedding)	Not endorsed
Unable to afford health care (doctors’ appointments, medications and specialists)	Endorsed
Unable to afford a variety of healthy food	Endorsed
Unable to attend important events such as weddings, funerals, birthday celebrations due to a lack of funds	Endorsed
Unable to participate in social activities with friends due to a lack of funds	Endorsed
Unable to take up a hobby or leisure activity of choice	Endorsed
No holiday in past 5 years	Endorsed
Service exclusion
Access to the Internet	Not endorsed
Availability of transport (ownership of or access to a car and access to public transport)	Endorsed
Retail services and ease of access to retail services	Endorsed
Health services and ease of access to health services	Endorsed
Good community services such as local post office, banking and library	Endorsed
Good leisure facilities, including local hobby groups, classes, sporting clubs or other groups	Endorsed
Services that assist in meeting individuals’ needs (e.g. community assistance programmes and support groups)	Endorsed
Stigma and discrimination
Stigma or discrimination	Endorsed
Being bullied by others	Endorsed
Belonging to an ethnic minority group	Endorsed
Belonging to a sexual minority group (e.g., gay, lesbian, transsexual or transgender)	Endorsed
Having a disability, physical or mental	Endorsed
Coming from a non-English speaking background	Endorsed
Being an immigrant	Endorsed
Being an indigenous person	Endorsed
Belonging to a religious or other cultural group	Not endorsed
Belonging to a number of minority groups or having additional issues of discrimination (e.g. having a mental illness and belonging to an ethnic minority group)	Endorsed
Individual circumstances and negative life events
A lack of desire or motivation to improve circumstances	Endorsed
A lack of time (due to other responsibilities) required to take part in activities to achieve good social inclusion	Endorsed
Self-exclusion due to a lack of interest in participating in such activities, fear or concerns about participating	Endorsed
A poor sense of belonging in general	Endorsed
Little understanding about social norms (perhaps from being surrounded by others who also do not understand or respect social norms)	Endorsed
Having to act as a carer for another person (therefore restricted opportunities)	Endorsed
Having experienced bad life events such as repeated rejections leading to a negative outlook on hope and expectations of life	Endorsed
Experiencing a number of negative circumstances for some time (e.g. a person with a disability, who has poor access to services and has been unemployed for a long time)	Endorsed
Civic and community participation
Voting in a local or federal election	Not endorsed
Attending council, community or local neighbourhood meetings	Endorsed
Taking part in a collective action designed to improve or protect the local social or physical environment	Endorsed
Belonging to a neighbourhood civic or community association	Endorsed
Belonging to a local services club or other local organization	Endorsed
Belonging to a local religious or cultural group	Endorsed
Talking to the local Member for Parliament	Not endorsed
Being a member of a political party	Not endorsed
Volunteering in a local charity	Endorsed
Assisting in the planning, organizing or running of a community event	Endorsed
Helping neighbours with odd jobs, lending tools or household items, looking after neighbours’ pets or house while they are away	Endorsed
Dropping in to a neighbour’s house or enquiring after them regularly	Endorsed
Illegal activity
Have a history of violence	Endorsed
Have a criminal record	Endorsed
Be using illegal substances (drug use)	Endorsed
Being involved in the manufacturing or dealing of illegal substances	Endorsed

Round 1

Of the 147 items, 94 were endorsed in Round 1. A total of 15 received 100% endorsement and 54 were considered important contributors to social inclusion by ⩾90% participants in each group.

A total of 49 items were sent through to Round 2; 28 items for re-rating and 21 for re-rating following clarification of wording. Four items were not endorsed during Round 1 (2.7%), not fulfilling criteria for either endorsement or re-rating.

Round 2

A further 28 items were endorsed during Round 2. Seven items were considered by 100% of participants to play a likely role in a person’s ability to achieve social inclusion, 8 by ⩾90% in each group and another 13 by ⩾80% of participants in each group.

Only one item rated again after clarification of wording required re-rating in Round 3.

A total of 20 items were not endorsed as important contributors to social inclusion in Round 2 (40.8%). A greater number of items were not endorsed in this round due to the rules of Delphi methodology.

Round 3

The single item re-rated in Round 3 was not endorsed.

Group differences

Significant between-group differences in the ratings of items were seen in six instances; five during Round 1 and one in Round 2 (see Table 4).

Table 4.

Differences between groups in ratings of items in Delphi study.

ItemDomain	Consumers%	Carers%	Community Members%	Chi square (χ²) or FET statistic	Sig value (p=)
Working in a chosen area of employmentLabour Market and Education	86.7^†	100.0	100.0	6.96^*	.007
No secondary school qualificationLabour Market and Education	80.0	100.0†	84.6	7.77*	.015
Living in a location other than where would chooseHousing and Neighbourhood	100.0	100.0	84.6†	7.98	.004
Earning an incomeEconomic	76.7	90.3†	56.4†	10.37	.006
Living in a household with othersSocial Resources	53.6†	85.2	80.0	8.33	.016

FET: Fisher’s Exact Probability Test.

Fisher Exact Probability Test value.

†

Cells with significant adjusted residuals (z>1.96, α=.05).

A smaller proportion of consumers endorsed the items ‘Working in a chosen area of employment’ and ‘Living in a household with others’. A greater proportion of carers endorsed the items ‘No secondary school qualification’ and ‘Earning an income’. Finally, a smaller proportion of community members endorsed the item ‘Living in a location other than where would choose’ and ‘Earning an income’.

Discussion

This research extends our work on social inclusion by furthering our understanding of key contributors to social inclusion beyond that of the work of academic and professionals. Findings from this novel and comprehensive study of consumers, carers and general community members’ perspectives of social inclusion are of significant clinical and research relevance.

Using a consensus technique, the core characteristics of social inclusion as identified by these three groups related to participation in social activities, social supports, housing and neighbourhoods, community involvement, employment and education, health and well-being, and service utilization.

There were some interesting findings – most items were either endorsed or not endorsed as important direct or indirect contributors to social inclusion by consumers, carers and community members alike. This indicated that people with a lived experience of mental illness (consumers and carers) and members of the general community share similar views regarding the importance of these contributors to social inclusion.

Items of particular interest were those who received 100% endorsement (seen in Table 3). These particular items highlight the importance of a solid support group, from which individuals can gain comfort and enjoyment, and the financial ability to participate in and celebrate activities and important life events. They also highlight the need to continue working towards reducing the stigma and discrimination experienced by people with mental health conditions (Hunting, Grace, & Hankivsky, 2015; Twardzicki, 2008) and to present opportunities wherever possible to encourage individuals who lack the motivation, or hope, to work towards improving their circumstances themselves.

Interestingly, disparity was seen between which contributors to social inclusion were considered important by professionals (as per Filia et al., 2018) and participants in the consensus study. A number of items endorsed by a very high proportion of the sample (>95% of each group) in the consensus study were only identified once or twice in 71 pieces of literature reviewed during the compilation of the list. These included items such as managing money independently, working in open employment, poverty compared to others in the community, a poor diet and lack of regular exercise, and a lack of time required to take part in activities to achieve good social inclusion.

Conversely, a number of items that appeared of significance in the literature failed to receive endorsement in the Delphi study. One example relates to civic participation, a theme seen repeatedly through the literature (Dorer, Harries, & Marston, 2009; Farrell & Bryant, 2009; Harrison & Sellers, 2008; Lloyd et al., 2008; Nash, 2002; Schneider & Bramley, 2008; Webber & Huxley, 2004) and often relates back to ensuring that all people have a voice and are heard. Nash (2002) noted that voting may help people with mental illness feel less disenfranchised from many societal functions and may be one of the most fundamental aspects of societal inclusion. Participating in activities such as collective action processes, and involvement in local or national decision-making (presumably through voting) was cited in nearly 40% of the literature reviewed by Filia et al. (2018). However, when presented to participants in the Delphi study, neither item ‘Civic participation, taking part in activities that share your voice as part of a community’ or ‘Voting in a local or federal election’ were endorsed. Nash (2002) did suggest that the paucity of literature regarding the right to vote for people with mental illness may be a consequence of its perceived lack of importance, which may also be evidenced here.

The item ‘access to the Internet’ similarly did not receive endorsement. This was despite the majority of participants completing the study online. The now almost ubiquitous nature of the Internet, with increased ease of access and decreased costs associated with accessing it, has perhaps contributed to its perceived value decreasing. Alternatively, there exists some reluctance to admit obtaining any social benefit from the Internet, with some stigma attached to reaching and identifying with others online without meeting offline. While there are demonstrated benefits of the Internet, enabling people to connect, find support and fill a need socially that may not be filled elsewhere (Brunette et al., 2017), these benefits were not recognized here

Strengths, limitations and implications

There was some confusion with the wording of several questions in the Delphi questionnaire; however, this was resolved easily by clarifying and presenting the items again for rating in the next round. There were also some challenges during recruitment. Some consumer advocates expressed discontent at not being involved in the compilation of the initial list of items. This option had been explored initially but a stakeholder approach was identified as a more comprehensive technique, with the opinions of all involved parties sought to ensure richer information than that obtained from just one or two groups.

We had originally wanted to have professionals included in the Delphi study. For mostly pragmatic reasons, the opinions of professionals were obtained via their publications (Filia et al., 2018) and presented to participants here with the option for them to suggest any additional items or feedback. This list was intended to serve as a prompt to participants and to facilitate engagement in the survey. While feedback was given on existing items, no new items were suggested to be added to the list. This suggests that the list of items was appropriately comprehensive.

Discussions held with participants emphasized the importance of determining whether contributors were in fact considered important or relevant to people with a lived experience of mental illness. Frequent discontent was expressed during these discussions, regarding the construction of concepts and measures applied to people with mental illness by academics or professionals who may not have any lived experience of mental illness themselves. The obtainment of input from people with a lived experience of mental illness, both consumers and carers, was therefore considered a major strength of the study. This input, of experts in their own circumstances, provided a different perspective regarding some of the key contributors to social inclusion.

Differences were observed between the importance placed on contributors to social inclusion by professionals and the opinions of participants here. This reinforces the need to understand and be constantly mindful of not only what is considered important and relevant from those with many years of observed, professional experience, but what is actually important and relevant to those who live everyday with, or alongside a person with, mental illness. The differences are not necessarily due to potentially uninformed, or ignorant academics, theorizing on what is important to social inclusion from a privileged position. The differences relate to the personal element, obtaining an awareness of how people with a lived experience really feel about contributors that might appear to be ‘essential’ to social inclusion, or be expected of individuals to participate in society. This understanding is essential, particularly in understanding how to progress in areas traditionally difficult to improve in people with such complex and interrelated sources of disadvantage.

In addition, identifying potential sources of motivation and change is essential in planning, delivery and implementation of services for people with mental health conditions. Clinical practices may be enhanced by using this knowledge to ensure that clinicians do not follow the same path for each individual. This increased understanding of what is important to each individual may vary from the values, roles and participation in certain activities commonly perceived as important in society. This may assist in engaging clients in more personally beneficial and important roles and activities. A broad understanding of what areas of social inclusion are affected is important, but more specifically identifying what areas individuals might require extra support in, or have the motivation or desire to improve, may greatly assist in making significant progress towards better mental health outcomes.

The information obtained in this study will also be of significant benefit to future research. One significant advancement is progress towards developing a measure of social inclusion. Despite the existence of several tools for measuring social inclusion for people with mental illness (Huxley et al., 2012; Lloyd et al., 2008; Marino-Francis & Worrall-Davies, 2010 ; Mezey et al., 2013; Secker, Hacking, Kent, Shenton, & Spandler, 2009; Stickley & Shaw, 2006), there remains a lack of measures that have a theoretical basis combined with the input of those with lived experience, and have also been psychometrically assessed. The findings of this study will be used in the development and assessment of such a measure, with the knowledge that the items and areas measured are of significance to social inclusion and relevance to those who the measure will be applied to. The benefit of such a measure will be seen not only with respect to enhancing the methodological rigour of studies but additionally will assist in the identification of which interventions are most effective, and most cost-effective, and at what stage of illness intervention is most beneficial in terms of improving mental health outcomes. A measure such as this will also be of benefit in a clinical sense, assisting with the identification of which areas of social inclusion would benefit most by receiving some attention for each individual.

Conclusion

We have reinforced the importance of having a strong sense of connection with people and highlighted the significance of finding ways to share important life events together. The value of a stable place to live in was also noted, as was the ability to access support services, and of personal motivation and hope in improving circumstances. As commonly seen in mental health literature, the issue of stigma and discrimination was noted as a problem, a barrier to achieving good social inclusion.

Merging the expertise of those with professional experience working in the field of social inclusion, and those most affected by social exclusion – people with a lived experience of mental illness – was important. It gave us a well-rounded perspective on the important contributors to social inclusion for people affected by mental illness. This insight is essential in effectively determining how to best improve circumstances in individuals and how we can reduce social exclusion in such disadvantaged populations.

Footnotes

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

This work was supported by a scholarship provided by an Australian Research Council Linkage Grant (grant no.: LP0883237).

ORCID iDs

Kate Filia

Sue Cotton

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