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Who Cares?

A Community Research Project

Funded by the NHS Community Bursary

May-July 2015

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Acknowledgements

We would like to thank all the carers that have participated to this community research, we

really appreciate the fact that they gave us their valuable time and shared their experiences

with us. We would like to extend our thanks to Mr. Mainul Haque from St Hilda’s East

Community Centre, Nimho Mohamed from Black Women’s Health and Family Support ,

Safia Jama from the Somali Integration Team, Maxie Syma from the Carers Centre, Susie,

Aggie, Parmila and Shumi from Short Work, and the Welfare Right Team at Account3.

Part 1

About The Study

1. Account3. Who Are We?

Account3 Ltd is a UK based, BME women led, training and development social enterprise founded in 1991. The primary business is finding innovative solutions to social issues and problems which hinder the economic development of local people, particularly in East London. The company operates a one-stop shop approach to providing advice, support, resources and education to local people. The company was established in culturally rich and diverse Bethnal Green, an area of East London which is home to socially and economically excluded minority groups from Bangladesh, Somaliland, Eastern Europe and West Africa. From the onset, account3's overall driver was gender equality and economic equity for women with particular reference to women facing multiple disadvantages. However, in 2009, and in response to a thorough client evaluation and review, the company's overall remit and service provision was extended to both men and women with the proviso that women-only provision will continue where there is a valid reason within the legal framework and the work with men supports women’s developmentu. Over the last 20 years, account3 has worked with over 15,000 local people; and partnered with various local companies to deliver various ERDF, ESF training programmes; Train to Gain contracts; Learning and Skills Council projects as well as local authorities funded programmes. The company is a pioneer and award winning service provider in the areas of Enterprise Development, Employability, and Vocational training, and has consistently maintained its examination bodies' accreditations, service specific quality standards and the Investors In People Award. In 2007, account3 was selected by Government Office for London as the Best Objective 2 Project for Equality for its Enterprise Development project, which overachieved and supported 300 local people to develop or grow their small businesses.

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account3's services now transcend its initial community development scope into areas of Academic Research, Capacity Building, the development of multi-dimensional social enterprises, International events management and other commercial activities often through a collaborative partnership approach. account3's partnership work spans several countries and various spheres of activity:

1. Meiji University, Tokyo, Japan - Research on Community Cohesion and Social

Enterprise; Visits and Lecture tours (1995 - date).

2. Government of Trinidad and Tobago - A partnership to promote Women's enterprise

growth in the Caribbean culminating in the first International Conference, Enabling

Enterprise in 2006

3. St Vincent - Childcare training

4. SEWA Development Nigeria - Civic Duties and Responsibility programmes

5. Hanshin University in South Korea, project on social enterprise.

2. Background of the Project Research

This community research project was funded by the Tower Hamlet NHS Community Bursary

/Tower Hamlets Healthwatch, with the aim to inform the Clinical Commissioning Group as

to the views of informal cares as in regard to the support they need to develop and sustain

themselves as informal carers.

3.Objectives

The “Who Cares?” community research project aims to understand Tower Hamlets informal

carers personal experiences, their perceived barriers and their expectations vis a vis support

services aimed at meeting their needs as carers. In addition to researching the latter, the

project also aims at investigating the effects of caring on informal carer’s health, social and

economical circumstances. “Who Care?”… for them?

4.Methodology and Recruitment

For the purpose of this short study, Account3 sought the view of forty informal carers living

in Tower Hamlets.

A series of eleven discovery interviews and two focus group using participatory appraisal

methods (PA thereafter) were planned and set up. In order to ensure that the views and

experiences of a diverse range of Informal carers were included in the research, Account3

approached a range of voluntary sector organisations that work with different groups in the

community: St Hilda’s, Black Woman Health, The Carers Centre, The Somali Integration

Team, and the Welfare Rights Advisors.

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This recruitment approach meant individual interviews and the PA groups sessions were

reasonably homogenous, ensuring a constructive group dynamic with participants that were

comfortable with each other, and that the experiences of a range of people were explored

across the groups.

Using PA to explore and understand people’s information needs and highlight problems or

barriers to accessing information was beneficial for this research in two main ways:

• obtaining multiple views and experiences in a short period of time;

•interaction between participants in the group setting produced useful insights, especially

relating to suggestions for improvements to existing information and signposting services.

The PA questions were designed with the help of four informal carers, all living in Tower

Hamlets, those informal carers also led the focus group sessions with our partner Short

Work.

An approach email was sent to voluntary sector organisations, named above, asking for

their assistance and offering an honorarium payment for informal carers’ valuable time in

taking part in this community research. This financial incentive (£25) was critical in order to

lift some of the barriers in participation: mainly research fatigue syndrome and financial

barriers. It cost informal carers money to participate in these exercise, as they cannot leave

their cared for person unattended. They have to look for alternatives, and these alternatives

are not necessarily free.

All participants were provided with an information sheet about the research, and all signed

consent forms and a receipt for payments recievedt.

The questionnaire was tested/piloted with three participants, and changes were made

following up on their feedback at the end of the interviews. The interviews were recorded

and analysed thematically. The principle of constant comparison was used to analyse the

data, resulting in the generation of recurring themes: such as access, loneliness, isolation,

lack of time, anxiety and depression.

The PA questions were designed with the help of four informal carers, all living in Tower

Hamlets, those formal carers also led the sessions with Short Work.

Difficulties encountered during this short period were: the timing of it. The field work

coincided with the religious obligation of the Muslim community Ramadhan, and a tube

strike on our last PA session (9th July). This meant many appointments were cancelled and

rescheduled. This also meant that we had to change the format of our PA sessions. In our

original proposal, we stated that we would do 4 PA sessions with 8 participants each, we

finally did 2 PA sessions with 29 people in total. These were facilitated by more PA

facilitators to manage the larger groups at the required quality.

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5. Findings

The findings identify the carers’ journey as an emotional and psychosocial experience that is

at times completely shocking, baffling, overwhelming but also rewarding. Although the

concept of a ‘journey’ is displayed in a linear fashion the journey is circuitous rather than

linear and different milestones in the journey may be visited and re-visited at critical

moments during the caring role.

Their views as to what support they need in order to continue caring for their loved one are

as follow:

Informal carers should be better identify by the health and social care professionals

Professionals to be more aware of services that are available

Professionals to speak to informal carers in a language that they can understand

Professionals to acknowledge that carers are experts

Better access to information that supports informal carers

Better access to support services for carers

Need for training for informal carers to support them in their role

Need to access counselling

Need to reduce the financial burden experienced by carers

Need for out of hours/week end services

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Part 2

Report Findings

1. Introduction

1.1 Who Are Carers

In the context of community care, a carer is a person who, though family relationship or friendship looks after a frail older person or someone with a disability, chronic illness or mental illness on an unpaid basis.

However, particularly when considering carers from minority ethnic groups, it is important

to take account of perceptions of what being a carer means and what the role entails, as

these may vary with cultural and religious expectations. There is evidence that some carers

from majority White groups in the UK may not see themselves as carers (Netto 1998,

Robinson & Williams 2002, Ribeiro et al. 2007), often preferring to describe themselves as

spouses or family members, but this point may be even more relevant among carers from

some minority ethnic groups (Ahmed & Rees-Jones 2008). Indeed, in some languages such

as Bengali, Gujarati, Urdu and Punjabi, there is no word that translates into carer, suggesting

that in these groups, the role may not be recognised (Williams & Johnson 2010).

Therefore when talking about carers and or informal carers within the community, it is

important to be very careful as to how and with whom we use that term, failing to do so,

can work as a further barrier to accessing services, and or the person failing to identify

herself as such, resulting in making them more invisible and potentially isolated.

1.2 How we think about carers

There has been an evolution in how carers’ roles are understood by the service system,

from the more negative focus on the “burden of care” in the 60’s toward strength-based

approaches. This has led to specific programs aimed at giving carers more support and more

control over how services are provided.

Carers are also increasingly acknowledged as the experts in their own lives, and for the

detailed and day-today knowledge they have of the person they are helping. Services are

being encouraged to see carers as in charge of the situation most of the time, often 24

hours a day, and to see professionals and care workers, who may be present for a few hours

per week, as a secondary “add-on” support.

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It is interesting and important to note that there is a diversity of caring arrangements that

can differ between cultures. Attitudes to the roles of adult’s children in caring for their aged

parents vary across culture. For example, in some BME communities a number of people

may share the role of carer and so asking about “primary carer” may not always be useful. In

some cultures, care is seen as a family obligation resulting in criticism for whose who

relinquish it. Culture can also influence how much the carer, care recipient or family will

allow a service provider to do.

Carers often have to manage multiple roles: as a carer and paid worker, as a carer and

parent, as both carer and being “cared for” at the same time.

2. Carers in the Local Context

When a loved one needs help, perhaps during illness or long-term incapacity, stepping in to help is an instinct. In May 2010 the first Tower Hamlets Carers Joint Strategic Needs Assessment (JSNA) identified that:

Tower Hamlets has around 21,000 unpaid carers in the borough1 out of a total population of 242,078

Tower Hamlet have a higher proportion of the population providing 50 or more hours of unpaid care per week than any other inner London Borough

About 9,000 people in the borough provide 20 hours or more unpaid care per week, of whom around 5,800 provide 50 hours or more per week

Certain groups of carers appear to be under-represented in terms of the proportion of carers’ assessments or reviews. These groups are Asian women of all ages, Asian male carers aged 18-64, carers of older people aged 65 and over with physical disabilities and LGBT carers, whom we do not currently record.

A higher proportion of the Tower Hamlets population (1.32%) provides 20-49 hours unpaid care per week to a family member, partner or friend than the London (1.01%) or England average (1.08%).

The proportion providing 50 hours or more per week in Tower Hamlets is the highest in England (2.38% in Tower Hamlets compared to 1.66% in London and 2.03% in England).

Nationally, carers experience worse general health than the general population. In Tower Hamlets carers experience worse general health than the national carers’ average.

63% of carers (providing 20 hours or more unpaid care per week) are female

18% of carers are of pensionable age.

3% of carers are under the age of 16.

44% of carers are Bangladeshi2 and 41% are white British

In the young carer group, 64% of carers are Bangladeshi (almost 80% of female young carers) and just 18% white British. This proportion varies across older age

1Percentage based on 2001 Census data

2 This is based on 2001 Census data and may have changed substantially since then.

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groups; 49% of working age carers are Bangladeshi and less than 16% of older carers are Bangladeshi

Asian carers of working age are disproportionately represented as carers compared to the Asian working age population as a proportion of the overall Tower Hamlets working age population.

A survey of carers in Tower Hamlets found that around two thirds of carers surveyed reported experiencing tiredness or disturbed sleep. Around one third of carers reported feelings of stress, depression and physical strain3. Carers in Tower Hamlets experience worse general health than carers surveyed nationally and the Tower Hamlets population in general. 41% of carers surveyed reported their general health to be good or very good (49% England average4), compared to 77% of the Tower Hamlets population as a whole5.

These figures demonstrate that the residents of tower hamlets offer significant free resources to the care sector, which is no mean feat in a borough where poverty is well established using any and all indicators. Decision makers when thinking about budget allocation might do well to consider the implications if these people become unable to continue to assist informally or worse require care themselves.

3. What Our Findings Shows:

3.1 Findings from our 11 discovery interviews

3.1.1 Who are our Informal Carers and how do they contribute

The huge positive impact and contribution that unpaid carers make is often unrecognised,

however we must recognise that they are tower hamlets’ unsung heroes. Below is a table of

characteristic that emerged from our 11 discovery interviews with informal Carers

Table 1 General Characteristic of the study sample

Characteristic Responses

Gender 9 Females 2 Males

Ethnicity 8 British Bengali 1 English 1 Irish 1 Dual Heritage

3 Tower Hamlets Carers Survey, NHS Information Centre, 2010. 42009-10 Personal Social Services User Experience Survey of Carers. Copyright © 2010, The Health and Social Care Information Centre. All Rights Reserved. 5 Tower Hamlets Carers Survey, NHS Information Centre, 2010 and Tower Hamlets Health and Lifestyle Survey, 2010.

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Employment Status

3 Part Time Worker 1 Student 2 Full Time Mum 2 Full time Workers 1 OAP 2 Not working

Age Range

20 to 30

31 to 40

41 to 50

51 to 70

71 to 80

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4

3

0

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Caring for 2 caring for daughters 5 caring for mums 2 caring for brothers 1 caring for brother and father in law 1 caring for dad and neighbour

Informal carers were asked as to how they become carers and although they did not choose

to care, most preferred to look after their family members or neighbours rather than have

someone else care for them.

“I’ve started to care full time for my brother, when my sister got married and left the family

house”. Male Informal Carer.

“I started to care for my mum since the age of 15, but I have been doing it properly since dad

passed away, it is now 18 years”. Female Carer

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Nature of care

Tasks performed as informal carers, depend on a number of factors, mainly the needs and

preferences of the person cared for and their own abilities. They are also very similar to the

tasks performed by formal carers that are being paid for.

Help given

Informal Carers

Personal Care Physical help Helping with dealing with care services and benefits Helping with paper work and financial matters Other practical help Keeping company Taking the cared for person out for walks or visit to relatives Giving medicines Keeping an eye on the cared for person to make sure she/he is ok Giving emotional support Other help

4 8 10 9 10 9 10 11 9 11 4

The household status of carers, that is whether they live with the care recipients or not, has an impact on the type of care provided. Those living in the same household are much more likely to help with personal and physical tasks than those caring for someone in another private household, and out of our 11 interviewees, 4 did not live in the same household. The personal cost of caring In addition to caring responsibilities, all respondents had other responsibilities such as childcare and work, one of the interviewees had five children and a husband, and the cared for person was not living in the same household. So it is easy to imagine the difficulties, the pressure and stress that this person experiences on a daily basis. “It is a constant struggle, between my family needs and my mum’s need. I would love mum to stay with me at home, but culturally she has to stay at my brothers, so I am constantly on the go”. Female informal carer. Through the questionnaire, we investigated the impact of their caring role on their

Physical and mental health

Private/Family/Social life

Working life It was clear from the discussions that were generated on this subject, that there was a growing concern about increased psychological distress, strain and overall health deterioration endured by informal carers. Isolation and lack of support might prove a high burden and can result in distress or mental health problems.

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“My marriage broke down as a direct result of me trying to care the best I can for my daughter. It was too much for him to take. Her condition and my time spend in caring for her, he could not handle it.” Female informal carer. The participants were asked if they were supported by agencies as carers, it was shocking to find out that 9 of 11 reply they were not. They mostly reported that the only support they have currently is from family or friends. As the caring responsibility fell upon them, they felt it was their responsibility and hence did not try to find information or advice as in regard to the support that they may have been entitled. “I went along with it” Female Carer As for people who tried to look for information, 2 reported that they find information is found fairly easily, 1 found it fairly difficult and only 1 person reported that it was very easy. It is clear that the majority of the informal carers we interviewed had a very poor knowledge of existing services aimed at supporting them be it statutory or voluntary. There are many reasons why this may be the case: people may not seek information about support because care-giving is perceived as the family’s responsibility; informal carers are not systematically identified as such by health and social care professionals, information is not given in a culturally appropriate way; there are language barriers between service providers and caregivers; issuers of social isolation, and concealment of illness due to stigma. Furthermore as highlighted earlier in this report, the term “carer” itself may not have resonance in minority languages and find it hard to identify with the term or recognise it as a formal role. “Sometimes I don’t even think I am human, there is no break. Mentally and physically its putting so much pressure on me, I cannot sleep at night. I don’t talk to people about it because they start judging you”. Female informal carer. Some informal carers find it very difficult to ask for the help that they need in order to cope with the situation in which they find themselves, especially where their adult identity has been based on a solid foundation of competence, capability and independence. It may take time for carers to realise that they are not coping, especially if they are making every effort to do so, and sometimes they may see asking for help as an admission of failure. Even once they have acknowledged the need for outside help, they may have difficulty in accessing it, for example because of a lack of knowledge about how the ‘system’ works, where to go and who to ask. The majority of informal carers reported that their respite needs were not being met. Unmet needs were hampered by the lack of information regarding criteria for access to respite. Informal carers were unsure of exactly which activities constituted respite care and for whom the service was being provided, 6 recipients out of the 11 interviewed did not know what respite care was.

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Even when equipped with knowledge of navigating the “system”, respite care was not an option. One particular interviewee stated she could not have access to respite, because her mother, was seen ‘very problematic’. Another noted lack of appropriate services. “My girls and I haven’t been on a holidays for 11 years now. I would like my mum to get into respite, however, the only catholic respite in the area I could put my mum in, has a very long waiting list.” Female informal carer. The financial cost of caring Carers frequently incur care-related costs that they would not otherwise have borne. These can include one or more of the following costs incurred as a result of the caring role: travel, additional household expenses or services, such as extra heating and food, accommodation and even re-location costs, where move of residence has been required. All of the 11 interviewees reported financial challenges directly linked to their caring responsibilities. All reported facing cut backs for themselves and their families. In acknowledgement of their financial position, some carers are able to claim Carers Allowance, this is limited to those who spend at least 35 hours a week caring for a person who receives either Attendance Allowance or Disability Living Allowance, and these benefits in turn are difficult to obtain without a formal diagnosis. Many informal carers do find it difficult to obtain financial support for this reason alone. The problem is exacerbated further, if the informal carer is earning over £110 per week. The interviewees reported the following:

Cost of travel and visiting the cared for person.

Additional household expenses and services such as extra heating and food.

Cutting back on food to make ends meet.

Have to borrow money “I often had to make financial sacrifices, I am now earning, l am looking after my children and my mum. Once I had to choose between my mum’s need and my daughter’s need for another pair of shoes to go to school with. For few weeks she had to attend school with a hole in shoes, until I could save the money, and buy her a new pair” Female informal carer. 3.2 Findings from 2 Participatory Appraisal Sessions

3.2.1 Motivation

The role of informal carers was also explored at the Participatory Appraisal (PA)group

discussions, where a total of 29 people attended to give their views as informal carers. The

first PA session took place on the 22nd of June, 14 people attended (12 women and 2 men).

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The second PA session took place on the 9th July, 15 people attended (13 women and 2

men).

While the pressure placed on carers by their caring role should not be underestimated, it is important also to highlight that for many carers the experience of caring for their relative or friend has many positive aspects. Below is a sample of what they thought were positive aspects of caring for someone:

“Makes me feel good about myself. Giving the help that she needs”.

“I feel I am stopping something that can worsen. You stop something bad happening”.

“When mum feels good, I feel good”.

“I like it because I get rewarded by a meal when mum is ok”

“Great when I get positive feedback from cared for person “

“Feel good when things goes well”

“Pay back time for family as she raised me up.”

“Its my duty and how I show respect for my family or elders a sense of giving back ”. Participants were then asked to identify the negative aspect of their caring roles. A few interconnected themes emerged during the discussion: difficulties in navigating through the system, relationship with professionals, the socio-economic impact, impact on own health and that of other family members, well being for informal cares and impact of cuts on services. With regard to professionals, many of the informal carers did not feel that health and social care professional are acknowledging them as expert or “co-worker”. Informal carers see their role as a full time job and note that both parties should be working toward better outcome for their patient/cared for. Instead they find : “Being patronised” “Not being listened to by professionals who should know better” “No recognition of my expertise” “Lack of understanding of what I go through” “Lack of empathy from social workers” A number of carers spoke of the psychological impact of these experiences, such as feeling helpless or ineffective in finding the help that they need, and anxiety or frustration caused by a lack of transparency in what help may be offered at the end of an assessment or following an enquiry to adult social services. The carers’ experiences of navigating the system of care, also had an impact on their well being. “Sometimes I feel worthless” “You get palmed off a lot of the time unless you know the system and what words to use”

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Added to their frustration on how professional are often treating them, service/budget cuts were also alarming them. All the people voiced their concerns about cuts to budgets and services. They thought the current cuts were having seriously damaging and destructive effects on service users. Indeed some service users thought that disabled people and elderly were being made a particular target of cuts. “Budget cuts take priority and are more important than the quality of services. The person I

care for, now only receives 2 incontinence pads a day, which is not enough.”

“ I am missing out on the Carers Allowance, because of the benefit cap”

4. Moving Forward

Throughout our study is was clear that informal carers are simply not receiving the support

they need to maintain their own physical and mental health and wellbeing while providing

care for someone else. Too frequently we heard of carers feeling isolated, lonely and

anxious, and not knowing who to turn to for support. Furthermore than requests were

ignored or not taken seriously by professionals.

The needs of informal carers changes over time as the care recipient become better able to

function or conversely develops different more complex and intense needs. If one is helping

informal carers to plan for the longer term, they must also be interested in understanding

the impact on the carer at the beginning, changing, continuing or ending their informal care

role will be relevant to providing a personalised services.

Below are the recommendation put forward by 40 informal carers that engaged with this

short study:

To acknowledge the informal carers’ expertise. They are the direct link to the experience of

the person to whom they are giving care. Explicitly acknowledging their expertise and

knowledge of the person they looking after is part of building a carer’s confidence and

resilience

To support the informal carers’ own health and well being. Talk about and offer

information and support around the carer’s need. Carers often think that their health needs

are secondary to those of the person they assist. Their level of stress is alarming, and some

were crying out for counselling. Their psychological strain should be addressed with

support, counselling, and/or cognitive-behaviour interventions.

Better identification and signposting. An over reliance on “self-identify” means many

continue to miss out on vital support services, which are also their rights as carers.

Need for simplification of forms.

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Need for training. Informal carers requested access to training to enable them to perform

their role better. Training that was suggested by participants in this study were training in

Raising Confidence, First Aid, moving and handling.

Improve the taxi service. To improve the taxi service that is currently running from

Scotland. Those taking the calls have no local knowledge and drivers often do not

understand the needs of the passengers with care needs, mobility issues etc..

Financial help for Carers. The unfair financial burdens often put informal carers into a

precarious situation, despite their role within the local and wider economy. Informal carers

should be given that extra financial help, failing to do so, can and does sometimes put the

carer below the poverty line.

References

Ahmed N. Rees-Jones I. ‘Habitus and bureaucratic routines’, cultural and structural factors in the

experience of informal care: a qualitative study of Bangladeshi women living in London. Current

Sociology. 2008;56:57–76.

Netto G. ‘I forgot myself’: the case for provision of culturally sensitive respite services for

minority ethnic carers of older people. Journal of Public Health Medicine. 1998;20(2):221–

226.

Ribeiro O, Paúl C. Nogueira C. Real men, real husbands: caregiving and masculinities in later

life. Journal of Aging Studies. 2007;21(4):302–313.

Robinson C. Williams V. Carers of people with learning disabilities, and their experience of

the 1995 Carers Act. British Journal of Social Work. 2002;32(2):169–183.

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Appendix 1 Questionnaire

NHS COMMUNITY INTELLIGENCE BURSARY PROJECT WHO CARES?

1) CARE DUTIES

Who do you provide care to?

Where do they live?

How long have you been a carer?

Have you always been a carer or did a specific incident cause you to become one?

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Over the last 12 months, what kinds of things do you usually do for the person you care for? Please tick [] all that apply

Personal care? a

(1)

(Things like dressing, bathing, washing, shaving, cutting nails, feeding, using the toilet)

Physical help? b

(1)

(Such as helping with walking, getting up and down stairs, getting into and out of bed)

Helping with dealing with care services and c

(1)

benefits? (Things like making appointments and phone calls, filling in forms)

Helping with paperwork or financial matters? d

(1)

(Such as writing letters, sending cards, filling in forms, dealing with bills, banking)

Other practical help? e

(1)

(Things like preparing meals, doing his/her shopping, laundry, housework, gardening, decorating, household repairs, taking to doctor’s or hospital)

Keeping him/her company? f (1)

(Things like visiting, sitting with, reading to, talking to, playing cards or games)

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Taking him/her out? g (1)

(Such as taking out for a walk or drive, taking to see friends or relatives)

Giving medicines? h (1)

(Things like making sure he/she takes pills, giving injections, changing dressings)

Keeping an eye on him/her to see he/she is all i (1)

right?

Giving emotional support? j (1)

Other help? k (1)

What other responsibilities do you have? (i.e.) paid work, other care responsibilities, childcare

Overall, how satisfied or dissatisfied are you with the support or services you and the person you

care for have received from the Health and Social Services in the last 12 months?

2) ADVOCATING/SPEAKING ON BEHALF OF A LOVED ONE

Do you advocate on behalf of your family member? (i.e.) speaking up for them in relation to medical

treatment, changes in their condition, additional needs etc?

Do you have the appropriate skills/knowledge to be an advocate?

Do you feel you are listened to by health professionals?

Is there anyone who is talking /advocating on your behalf as a carer?

If yes, who is this, and why is this person doing this on your behalf?

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If not, why not?

Who do you turn to for help?

What services do you access to help you fulfil your role as a carer?

3) POTENTIAL BARRIERS

Do you have any worries about your role that you would care to share with us?

How does your caring responsibility impact, if at all, on:

Your physical and mental health

Your private life/Family/Social life?

Working life

If any barriers, how do you think they can be addressed and lifted?

4) SUPPORT MECHANISMS

Have you used any of the support or services listed below, to help you as a carer over the last 12

months?

Y

N

Don’t know

a. Information and advice 1 2 3

b. Support from carers’ network groups or someone to talk to in confidence

1

2

3

c. Training for carers 1 2 3

d. Support to keep you in employment 1 2 3

What support mechanisms do you find most useful?

Why? How?

What do you think about respite care, for your cared one?

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What do you think about respite care for you?

What’s your experience been so far?

How could respite care for your cared one can be improved?

How could respite care for you can be improved?

Do you have external/paid carers coming in?

How’ve you found the support they provide? What’s been positive/negative in your experience so

far?

What could be improved?

5)Quality of Information for Carers?

In the last 12 months, have you found it easy or difficult to find information and advice about

support, services or benefits? Please include information and advice from different sources, such as

voluntary organisations and private agencies as well as Social Services.

Please tick () one box

I have not tried to find information or advice in the last 12 months 1

Very easy to find 2

Fairly easy to find 3

Fairly difficult to find 4

Very difficult to find 5

6) MOVING FORWARD

What could be put in place to improve your ability as an advocate?

What would help you to continue to managing your family member’s care?

What would help to enhance your quality of life?

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Appendix 2 Participant Information Sheet for Informal Carers

June 2015

‘Who Cares?’ – Research Project with Informal Carers

We are very pleased that you have agreed to take part in the above study. This information sheet

explains why this study is being carried out and what it will involve. We would be grateful if you

could read the following information carefully. Please contact us if anything is unclear or if you

would like more information.

What is the purpose of the study?

The purpose of this study is to understand the views, opinions and experiences of informal carers in

Tower Hamlets.

Who is organizing and funding the study?

The study is being co-funded by Healthwatch and the Tower Hamlets Clinical Commissioning Group

(THCCG)

Why have I been invited?

You have been invited to participate on the basis that you are a carer and live in Tower Hamlets.

Do I have to take part?

Participation in this study is entirely voluntary. If you are happy to take part, you will be given this

information sheet to keep and be asked to sign a separate consent form. You are still free to

withdraw at any time and without giving a reason.

What will the research involve for me, if I take part?

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Involvement in the study will mean that you will either take part in a one-to-one discussion or,

alternatively, join a discussion group with others.

All interviews will be fairly informal and will take the form of a discussion. There will be a loose topic guide

that will outline a number of areas to talk about but it will be designed so that discussions are open-ended,

flexible and responsive to what you might have to say, thus allowing for spontaneity and full exploration of

the issues from your perspective.

The topic guide will focus upon your experiences as a carer, what kinds of support are accessible and

what improvements could be made.

Interviews will be recorded, if permission is granted, and then transcribed by the study team. All

recordings and the transcriptions will be anonymised and any information that could lead to

participants being identified will be removed.

What are the possible risks and disadvantages of taking part?

There is a possible disadvantage in spending time to take part in the interviews.

What are the possible benefits of taking part?

Those taking part would be contributing to a study which we hope will prove of benefit to health and

social care provision. It is important that THCCG/Healthwatch understand the views and

experiences of carers so that services can be improved.

Will my taking part in the study be kept confidential?

All data from interviews will be treated as entirely confidential by the study team. The participation

of all those taking part will also be entirely confidential. Healthwatch/ THCCG will not be aware at

any time of who has taken part in this study.

All data from interviews will only be available to the study team. It will be securely stored and will be

treated as confidential at all times. All interview transcripts will have any personal identifying

information removed before analysis and will be destroyed as soon as the project is complete.

Quotations from the interviews will be used in the final report but participants in the study will

remain, at all times, unidentifiable. Thus all references to where you or your family might live or

work, for example, will be deleted.

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What will happen to the results of the study?

The data will be analysed and written up and will be made available to THCCG as a final report.

Participants will not be identified and THCCG will not have access to interview transcripts. On

completion, the data will be securely destroyed and not used for any other purpose.

Ultimately the report will fit into an overarching Community Intelligence Report outlining key issues

and recommendations to commissioners and providers.

What will happen if I don’t want to carry on with the study?

You can withdraw from the study at any time and your data will be destroyed immediately.

What if there is a problem or you wish provide any feedback, please contact:

Alternatively you may wish to contact the independent organization, Healthwatch whose contact

details are below.

Healthwatch Tower Hamlets

Room 12, Block 1 (Trust Offices)

Mile End Hospital

Bancroft Road

London E1 4DG

Office number: 020 8223 8922

Freephone number: 0800 145 5343

Email: info@healthwatchtowerhamlets.co.uk

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Thank you again for considering taking part in this study and taking the time to read this

information.

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CONSENT FORM

This consent form should be completed by all participants in this project and returned to the address below. Please keep a copy for your records. Many thanks for your cooperation in this. Title of Project: ‘Who cares?’ Research Project Name o f Interviewer: ............................................. Please initial box

For Participating Carers 1. I confirm that I have read and understand the information sheet, dated June 2015 for the above study. I have had the opportunity to consider the information, ask questions and have had these answered satisfactorily. 2. I understand that my participation is voluntary and that I am free to withdraw at any time without giving any reason. 3. I agree to take part in the above study. I am the carer: _______________ ________________ _________________ Name Date Signature Please complete and sign this form and return it to the interviewer at the time of the interview.