Background
Methods
Data collection
Recruitment
Data analysis
Ethical considerations
Results
Pseudonym | Age | Living Arrangements | Other chronic illnesses identified by participants | Number of people in network |
---|---|---|---|---|
Annabelle | 66 | Lives with spouse | Joint problems, Meniere’s syndrome, asthma, anxiety | 8 (3 professional, 5 social) |
Bonnie | 77 | Lives with spouse | Bowel issues, back problems, asthma | 8 (5 professional, 3 social) |
Florence | 85 | Residential care | Leg pain, swollen knees, back pain, leg ulcer/ft ulcer, depression. | 5 (2 professional, 3 social) |
Rupert | 76 | Lives with spouse | Heart issues (bypass), pacemaker, lung problems (asbestosis) | 9 (3 professional, 6 social, 1 pet) |
Maxwell | 52 | Homeless shelter | High blood pressure | 4 (all professional) |
Jack | 53 | Homeless shelter | Depression, high blood pressure, high cholesterol | 11 (6 professional, 5 social) |
Rosemary | 72 | Lives alone | Leg amputation, kidney problems, anxiety | 14 (8 professional, 6 social) |
Kate | 49 | Lives with ex-spouse and children | Peripheral neuropathy, cellulitis, high blood pressure, breast abscess, high cholesterol and thyroid problems | 9 (3 professional, 6 social) |
Alexander | 52 | Lives alone | Schizophrenia, Rotor Syndrome, Parkinson’s disease, arthritis, anxiety, chronic stress, bipolar, alcoholism | 8 (4 professional, 4 social and 1 pet) |
Robert | 51 | Lives alone | Epilepsy, schizoaffective psychosis, anxiety | 10 (7 professional, 3 social) |
William | 69 | Lives alone | Sleep apnoea, asbestosis, glaucoma, depression and bipolar | 9 (8 professional, 1 social) |
Miranda | 94 | Lives alone | High blood sugar, heart problems, cancer (breast) | 9 (3 professional, 6 social) |
Stanley | 78 | Lives alone | Depression, heart problems, memory problems | 11 (8 professional, 3 social, 1 pet) |
Sophie | 64 | Lives with spouse | Legally blind, arthritis, bipolar, thyroid problems | 5 (4 professional, 1 social, 1 pet) |
Emily | 32 | Lives with housemate | Stroke, arthritis, shortness of breath, depression and anxiety | 9 (6 professional, 3 social 1 pet) |
Penelope | 44 | Lives alone | Breast abscesses, obsessive compulsive disorder, sleep apnoea, depression | 10 (6 professional, 4 social, 1 pet) |
Jacqueline | 62 | Lives with spouse | Cardiovascular disease, agoraphobia, panic attacks | 9 (6 professional, 3 social) |
George | 59 | Lives alone | Depression, stroke, memory problems. | 4 (1 professional, 3 social, 2 pets) |
Peter | 85 | Lives in hostel | Heart problems (triple bypass), high blood pressure, anxiety | 9 (7 professional, 2 social) |
Patrick | 79 | Lives with spouse | Kidney problems (on dialysis) depression | 9 (6 professional, 3 social) |
Edward | 64 | Lives alone | Depression, osteoarthritis | 9 (6 professional, 3 social, 1 pet) |
Beatrice | 79 | Lives with spouse | Depression, high blood pressure, osteoporosis, arthritis | 7 (4 professional, 3 social) |
Richard | 56 | Lives with spouse | History of TIAs, high blood pressure | 8 (6 professional, 2 social, 2 pets) |
Libby | 56 | Boards with friend | Back pain, chronic pain, amputated toe, peripheral neuropathy sleep apnoea, suicidal tendencies, anxiety, depression | 7 (5 professional, 2 social, 1 pet) |
Ben | 71 | Lives alone | Dépression, leg amputation, infections, glaucoma | 11 (10 professional, 1 social) |
Felix | 73 | Lives with spouse | Retinal detachment, joint replacement, depression, hypertension, kidney problems, arthritis | 9 (4 professional, 5 social, 3 pets) |
Cameron | 55 | Lives with housemate | Kidney problems, crippling skin condition (unknown cause, not responding to treatment, needs to stay indoors), depression | 7 (3 professional, 4 social) |
James | 78 | Lives alone | Depression, anxiety, dementia, high blood pressure | 11 (7 professional, 4 social) |
Alexandra | 53 | Lives alone | Kidney disease, liver disease, high cholesterol, depression | 12 (9 professional, 3 social) |
Network with spouse | Network without spouse | |
---|---|---|
Mean number of ties | 3.44 | 3.30 |
Informal | SD ± 1.59 | SD ± 1.66 |
Formal | 4.55 | 5.65 |
Total ties | SD ± 1.24 | SD ± 2.46 |
7.89 | 8.95 | |
SD ± 1.27 | SD ± 2.58 | |
Number of ties of each strength | 43 (57 %) | 82 (47 %) |
Strong | 21 (28 %) | 58 (34 %) |
Medium weak | 11 (15 %) | 33 (19 %) |
Range of network centralisation index scores | 6.6–60.8 % | 12.5–90.1 % |
Spousal network | Network without spouse | |
---|---|---|
Informal support | ||
Spouse | 6 (14 %) | 0 (0 %) |
Other family | 4 (9 %) | 17 (22 %) |
Friends/social groups | 2 (5 %) | 8 (10 %) |
Pets | 3 (7 %) | 4 (5 %) |
Neighbours | 0 (0 %) | 3 (4 %) |
Formal support | ||
Community nursing service | 8 (19 %) | 11 (14 %) |
Medical (excluding psychiatrists) | 7 (16 %) | 12 (15 %) |
Personal care/carer | 7 (16 %) | 11 (14 %) |
Mental health workers | 1 (2 %) | 5 (6 %) |
Allied health | 4 (9 %) | 6 (8 %) |
Transport | 1 (2 %) | 1 (1 %) |
Informal networks
Role of spouse and family members
Yes he does [help me]. He is marvellous. He does the cooking and things. Shopping….[He] is my mainstay really. (Bonnie, 77 years)
Interviewer: So what does [husband] do for you?He reminds me to take my insulin and if I have a hypo he gives me something to eat and drink. (Sophie, 64)
The only thing that anybody does for me that is done automatically …, is that [ex-husband] puts my tablets together. He’ll get up in the morning and put in what I need for the day and at night he’ll give me what I need for the night time. That started to happen because of the neuropathy. (Kate, 49)
[my wife does] Lots of things I guess. All the things that she thinks are very important and maybe I don’t. (Rupert, 76)Interviewer: Do you have carers at all or a carer coming in to help with the house?No, my wife is the carer of me and I’ve got domiciliary care. (Richard, 56)
I can’t, you know, write in English and she got to take everything to send to doctors and specialists and…Interviewer: So she talks to all the people for you?All of these people, yes (Patrick, 79)
Valued weak tie support: neighbours and incidental people
I’ve got a chap across the road here who I see once a morning when he comes to work and probably in the afternoon. I make a point of getting out there waving goodbye or something, you know? (Stanley, 78)
Interviewer: Would you see them [the neighbours] regularly?Yes every day or every second day. We don’t live in each other’s pockets. If they don’t see me they start looking. (Alexander, 52)
The day when all the kerfuffle broke out down there she was contacting me probably every couple of hours to make sure I was okay… it was scary and having – you know, if I’d brought the cops onto the scene it wouldn’t have worked but at least I knew somebody was at the end of the line. (Libby, 56)
Role of pets
She is my pride and joy, mate. When I’m feeling down and sometimes depressed, when she used to get up on my bed but now she comes near me, near the chair, she always makes me feel better and if she’s happy I’m happy (…) we’ve got a very strong bond together, very strong bond. (Penelope, 44)
Budgies, yeah. And I’ve got three… But they’re my job, you know…It gives me some security of knowing that I’ve got a job to do, you know? (Stanley, 78).
Well I used to do volunteering a lot with dogs, with pets and that, and round nursing homes. I went to [nursing home] in Melbourne a couple of times. They’ve got a big ground there – this is well before I was sick – and I used to take the dog in there and let the dog run around with the patients (William 69).
Role of formal support
She showers me, she puts all my creams on where I need it, she’ll do meals if I need them. She always does my breakfast, makes my bed, does the washing. If it needs sweeping she’ll sweep the floor. She’s very good. (Rosemary, 72).
She takes my blood pressure and checks my chest and checks my sugar levels and breathing exercises. A lot. [The nurse] does a lot. And if she’s got any query then she’ll ring [the Dr] (Bonnie, 77).
See Thursday is pay day so P [taxi driver] will come round. P will come round and he’ll drop me off at the shopping bay, run away and do a couple of jobs and then come back and when I’m ready I ring him and tell him and he picks me up (Ben, 71).
I tend to be very loyal. When I got out of hospital she was the first cleaning lady I had. They kept sending me around all sorts of people and I kept getting nasty with them and they kept going away and then they sent her back and she doesn’t stand any nonsense (…) Well, we got to be friends over a long period of time. (Ben, 71)
I see her if I come in here to say hello (…) I’m not actually allowed to consult with her because I’m not classed as homeless.Interviewer: So it’s more that you just catch up with her, it’s more of a social thing?Yeah she just makes sure my sugar’s okay and everything’s going okay.Interviewer: So she does it on the quiet?Yeah because if it wasn’t for her I wouldn’t have even known I had golden staph (Alexandra, 53)