Ageing with chronic conditions and older persons’ experience of social connections: a qualitative descriptive study

Study design

A qualitative descriptive approach was used, as it supports a comprehensive understanding of the experience of social connections of older people with chronic conditions. This design allows the researcher to remain close to participants’ words, and describe the human context of their experience (Kim et al. 2017). Qualitative description generates data directly from participants about health issues, so is highly useful in informing intervention design (Kim et al. 2017).

Participants and setting

Participants were drawn from the ‘Connecting Care in the Community’ (Connecting Care) program delivered within the Southeastern New South Wales (NSW) Primary Health Network, Australia. Connecting Care is a free nurse-led service for community-dwelling older people (aged ≥60 years) with one or more targeted chronic conditions, including chronic obstructive pulmonary disease, hypertension, ischaemic heart disease, congestive cardiac failure or diabetes (Lucas et al. 2017). Health professionals could refer to the program or people could self-refer. The study was undertaken, as registered nurse (RN) program leaders identified that many participants raised their reduced social connections, and resulting loneliness and social isolation during program consultations.

The Primary Health Network extends along the south-east coast of NSW, and participants were drawn from three Local Government Areas in the region’s north. The population aged ≥65 years ranged from 17.8% to 27.3% across these Local Government Areas (Ghosh 2019). The region encompassed urbanised zones, coastal hamlets and rural communities (Ghosh 2019).

Recruitment

Participants were recruited from an initial survey that explored the impact of older peoples’ chronic conditions on maintaining social connections (Halcomb et al. 2022). Survey participants were enrolled in the Connecting Care program, English-speaking and capable of providing informed consent. At survey completion, respondents could indicate interest in participating in an interview.

A purposive sample was drawn from interested survey respondents chosen to ensure variation across age, sex, chronic conditions and geography. Selected respondents were contacted by one of three female Connecting Care RNs. These RNs had qualitative research experience and were research team members. They explained the study, screened the person for eligibility and provided study materials. If the person was eligible and agreed, an interview time was arranged.

Data collection

Semi-structured interviews were conducted by the three RNs in February 2021 predominantly within the older person’s home. The interview schedule was developed by the researchers (RNs and nurse academics) after reviewing survey findings (Halcomb et al. 2022). Demographic questions about age, sex and chronic conditions were included. Open-ended questions were designed to elicit participants’ perceptions of their social connections and the potential impact of their chronic conditions on social participation. Views about the role of general practice in supporting social participation were discussed. For example, questions included: ‘How would you describe your social network?’ and ‘Can you tell me what if any changes have occurred in your social life and connections since you developed your chronic health issues?’ As the COVID-19 pandemic had just emerged, issues relating to COVID-19 were explored. Field notes were documented after each interview. Interview progress was regularly discussed by the research team, and interviews were ceased when no new data were emerging. All interviews were audio-recorded and transcribed verbatim by a transcription company before being imported into NVivo (ver. 12).

Data analysis

An inductive approach of reflexive thematic analysis was used for data analysis (Braun and Clarke 2022). Transcripts were reviewed against the recordings by one researcher (CT) to check accuracy and ensure data familiarisation. Preliminary codes were generated. Coding was examined by all team members with a clear audit trail developed. Codes were combined into themes with analytic memos documented as a form of reflexive journaling to assist with the further identification of patterns and theme development (Braun and Clarke 2022). Themes were then reviewed against the coded extracts before consensus was reached on the final thematic structure. The research team met frequently to explore inherent biases and support confirmability (Lincoln and Guba 1985). Results were written up using participant quotations to illustrate the findings.

Ethical considerations

Approval for this study was provided by the University of Wollongong Human Research Ethics Committee (Approval Number 2020/373). Pseudonyms are used for confidentiality.

The experience of loneliness

Loneliness was frequently described as an inevitable part of ageing, ‘you just get to live with it’ (Harry). For some, loneliness resulted from the death of their spouse/partner, and for others, because their spouse/partner had moved into residential care, ‘Lonely? Yes, since my wife’s been placed’ (Walter).

… occasionally I will get the lonelys real bad, and then I’ve got to shake my head and say oh well, that’s life, and just move on and get used to, really, being on my own. (Sergio)

… it is a bit lonely when you’re on your own and that because you haven’t got your partner with you, and things like this and that. You constantly think about it … (Walter)

Several participants described the challenges of living alone and spoke of loneliness being more acute, ‘mainly of a nighttime, when it comes around teatime’ (Sally), ‘it’s night times that are worse …’ (Sophia).

Participants still living with their spouse/partner identified this person as their primary source of emotional and often practical support.

I live with my wife here … my wife does a lot of the work, and everything … Yeah, we both support each other. (Silas)

My husband’s been wonderful, as he’ll tell you. I’ve been very lucky because I mean, anyone that didn’t have a supportive husband, I don’t know – it would have been really hard for them. But, no, he’s been very supportive. He’s well trained. (Wilma)

Loneliness had a negative effect on participants’ emotional wellbeing, with some experiencing depression. For some this depression was directly linked to their chronic conditions.

… when I’m feeling really bad I just go to bed, and I may be there for two days … But that’s what happens when me legs start going on me, and this – lung business. (Hubert)

Some participants identified that their personal resilience helped them to deal with loneliness: ‘You bounce back. You go down, and you bounce back. That’s just life, yeah’ (Wanda). However, others preferred not to dwell on their situation: ‘I try not to think about it. Truly, I just get along with my life and try not to think about it’ (Sally).

Managing diminishing social contacts

Reduced social networks and limited social interaction led to social isolation. Participants predominantly identified friends and neighbours as important social networks, whereas families were key sources of social support. One participant stated that their ‘social network is deteriorating rapidly, because my neighbours are leaving this world’ (Sergio), and others described how ‘a lot of them [friends] are dead’ (Herman), ‘we haven’t got any friends whatsoever’ (Hubert). Old friendships were valued, and participants spoke of enduring relationships forged at different life stages.

On Wednesdays, I go and have a coffee with all my old football mates … We were going around to each other’s houses, but now we just go down to the bottom of the hill, and have coffee … That’s wonderful. Unfortunately, we’d lost two of them in the last three months, dying, you know. (Wayne)

For some, social isolation was reduced by maintaining contact with friends through letter writing or social media.

There’s a girlfriend I’ve had since age 15. And she is in [location], we had our first job together, our birthdays are in the same month … and so I just wrote her a letter and posted a card off to her yesterday and she sends to me. (Winifred)

I’ve got a couple of mates and they tell me what’s going on, because they’re on social media, so they let me know who’s alive and who’s dead, and stuff like that. (William)

COVID-19 limited participants’ interactions significantly due to cessation of usual activities and fear about participants or their family perceptions of increased risk of death should infection occur, ‘Oh my husband – again, he was always scared with COVID if I went out I’d get it, and be gone’ (Selma). As interaction with friends and family was minimised, contact with neighbours became especially important.

… I had the neighbours, we’d sit out the front and have a bit of a chat, so we always had somebody to talk to – which was lovely. We didn’t go inside so much, but we’d sit there and have a bit of a chat and be like, well, I’ve talked to somebody today, and that was good … Yes, and we all were in the same boat. (Wanda)

The pandemic highlighted the loneliness and social isolation of older people more broadly. Some participants felt that the pandemic ‘normalised’ their lack of social interactions.

Living with chronic conditions

Chronic conditions resulted in changes in physical capacity, levels of independence and sense of identity that reduced participants’ ability to maintain social connections, which increased loneliness and/or social isolation. For most participants, getting older was not a positive experience, and their chronic conditions amplified the negative aspects of ageing, with frustration arising from their physical limitations.

It sucks. You just can’t do what you want to do (Sophia).

I just get frustrated … I can’t do some of the simple things. Or some of the simple things I do take twice as long, if not longer … Like I used to be able to go out and mow the lawn. Now I get somebody to mow my front lawn. (Stanley)

It’s a slow, inevitable death knell, which you have to battle – you have to battle it every day. What you have to say to yourself is, ‘I’m crook, but I’m here’. When I first get up in the morning, I can hardly walk. (Seamus)

Participants spoke extensively about the impact of chronic conditions, and how loss of function and independence exacerbated loneliness through diminished social connection. Indeed presenting symptoms and tiring quickly affected their ability to go out.

If I’m feeling up to it, I can get in the car and drive down to the shop. I wouldn’t shop-shop, because I couldn’t carry it … I know when I’m getting tired … and standing in the one spot – I don’t know why – after a while my legs are going to jelly, and I’m thinking – I say, ‘I’ve got to go’. And I feel awful. (Selma)

… because I was always sort of short of breath, I never really wanted to … I stopped going shopping. My husband got the job for that. So I didn’t go out very much. (Wilma)

Participants declined social opportunities if they were worried about appearing unwell. ‘Sometimes I get a bit embarrassed about being so breathless when I’m with my friends’ (Sally). This meant that most participants shifted from their previous active life to a more sedentary life, which reduced engagement in social activities and limited social interaction.

… I used to be active. I used to be able to do things and … you know, I used to be able to go camping and everything else. But that’s all changed in life and that now, so, you know. (Silas)

The only thing that frustrates me, which I never used to do, I never ever turned the TV on until about five o’clock, I’m not a sit down to watch TV or a movie person and I never used to sit down, I was always cleaning out a cupboard or doing something, but now I just sit most of the time, unless I can motivate myself. (Winifred)

Several participants spoke about how the time required to manage their health impacted on social activities. They also spoke about the compounding effects of multimorbidity and how exacerbations reduced their participation capacity.

Well, I’ve got a full book anyway now with people coming round. I’ve got another appointment with – the heart people sort of send people around … I’ve got an appointment with my heart doctor next week … (William)

[The GP is] becoming a pain; he wants me down there every week or so. I don’t want to play every week. (Herman)

The consequences of ageing with chronic conditions were described by participants as a life of diminished independence, identity and self-confidence. ‘I don’t think I can do anything now, I’ve got so weak, my body’s gone weak’ (William). Participants contrasted their mental image of themselves with the reality of their older body.

Yeah, well, I am a young old person. I don’t feel old … and I don’t think I have old views … just my health restricts me a fair bit, that’s all. (Sergio)

For others, this loss of independence and identity was sharply illustrated when it was suggested they move in with their adult child, as they were no longer capable of living on their own, with the fear expressed: ‘… You become, “This is my father. He sits on his arse and does nothing” … my identity’s gone into the background’ (Seamus).

Barriers to social connection

Barriers to social connection comprised: (1) getting around, and (2) attitudes to maintaining and forming new social connections.

Facilitators of social connection

Three sub-themes expressed facilitators of social connections, namely: (1) access to general practice care, (2) family contact and support, and (3) feeling part of the community.

Limitations

As this study was conducted in a chronic care program in a particular locality, findings may not reflect conditions in other localities. People volunteered to participate, and this may have resulted in those with strong views volunteering. As these people were linked with a chronic care program, they were already receiving some support. The impact of chronic conditions on social connections may be even more pronounced for those who are not engaged in a support program. There may also have been response bias, particularly social desirability bias, given the stigma associated with loneliness and social isolation (Galvez-Hernandez et al. 2022). Findings may have been influenced by the timing of data collection, which occurred after the experience of lockdowns and prior to widespread COVID-19 vaccine availability. People from culturally and linguistically diverse groups may have different family structures and cultural expectations, and different challenges in social connection to the English-speaking participants of this study. Further research exploring culturally and linguistically diverse groups is needed.

Implications for policy and practice

This study provides important insights for general practice teams wanting to support older people with chronic conditions in improving their social connections and minimising loneliness and social isolation. Participants’ circumstances varied, as did the factors influencing their social participation and experience of loneliness and social isolation. This suggests that a one size fits all solution may be ineffective. Government policies to encourage ageing at home are likely to be unsuccessful without tailored interventions to maintain older peoples’ social relationships. It is important to assess the underlying cause of loneliness and social isolation, so that an appropriate intervention is recommended and undesirable outcomes are minimised (Galvez-Hernandez et al. 2022). Such interventions need to be cognisant of the personal context of each person; for example, their physical limitations, particularly mobility restrictions and access to appropriate transport (Shi et al. 2023). Facilitated transport support may be required because of mobility impairments arising from chronic conditions. General practitioners and general practice nurses could suggest mobility aids, advise about community transport options and/or promote digital solutions to help older people maintain social connections. Linking the older person with local aged and social care agencies may also promote access.

Physical activity interventions have been identified as a promising strategy for older people to reduce social isolation, ameliorate the impact of sedentary lifestyles and improve mental wellbeing, while accommodating physical limitations (Yang and D’Arcy 2022). Although productive social interventions may assist those with poor social networks, older people with chronic conditions are a population where further research is needed to optimise social connection interventions.